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LUPUS UK
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GP visit - shocked at response

Hello everyone this is my first time posting on this community although I have been reading for advice and info for some time and you are all very helpful. My journey started in 2014 with investigations for possible PBC (positive Anti-mitochobdrial antibody and elevated liver function tests). I was then referred to Rheumatology in 2016 as I have Raynaud's which was getting worse, a blood test showed a positive ANA result. Local Rheumatology suggested at first possible Scleroderma based on my symptoms and GAVE diagnosis but in 2017 I developed new symptoms suggestive of Lupus and I was then referred to CTD clinic for further help. I tested positive for Ro-antibody and ANCA-positive with MPO. In 2018 I was diagnosed with UCTD. I have unsuccessfully tried Hydroxychloroquine twice due to severe gastritis and at my last appointment in February this year I was given a steroid injection to see if this would help my symptoms, which it did. I was also told Azathioprine would be considered if the injection was helpful. I was supposed to be reviewed in three months, I have now been told there is a six month backlog. During the last twelve months I have developed anxiety and left my job which I loved but was physically unable to do. I have had CBT counselling which has helped control panic attacks but have been a regular visitor to my GP for various reasons, recurrent sinus infections, several vitamin and iron deficiencies, osteopenia and many symptoms that have developed. My usual GP has always been patient and considerate until today, I was shocked by some of the comments she made when I asked to discuss the UCTD and new symptoms. As I explained that I was unsure about another steroid injection due to side effects and asked her about Azathioprine as immunosuppression concerns me she responded by saying ..... "unfortunately you have been dealt this hand of cards in life and you must decide whether you want to live like this or take the treatment." She then continued to say it was not her place to talk to me about Azathioprine and I need to ring the CTD clinic, she said she is frustrated as a GP with limited knowledge at my repeated visits to the surgery. I can understand this to a certain extent but my question is as my next appointment could be six months time, who do I go to inbetween when new symptoms crop up? I feel like I have been disciplined and now i am concerned to visit the surgery in future for fear of being branded a time waster. Sorry for the long post and thank you for listening. Any advice would be gratefully received 😊

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As a person with a serious chronic illness, you deserve more compassionate care than that. I can understand the GP’s frustration with the inability of rheumatology to properly care for their patients. But that response, in my opinion, was dreadful. It is not your fault that you have this disease and not your fault that there is a shortage of rheumatologists.

Is there a specialist nurse who can answer questions by phone? Don’t hesitate to bring up medication issues here. There are many who will have had experience.

It sounds like you had a good relationship with this doctor until this appointment. If her insensitivity means you cannot trust her, maybe you should see another GP. If you think she is at the end of her role having to handle cases that specialists should be handling, maybe you could talk to her and move forward. I would have been pretty upset by her attitude.

K

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Hi and thank you for your kind response. Yes I think she was basically saying there is no more she can do for me regarding CTD and she has always been frustrated at how long it's taken for appointments, diagnosis, treatment etc... She also said I need to stop over thinking the treatment. I just wouldn't have expected her to be so blunt! I've cried twice tonight because this disease is awful and unforgiving. I've gone from working and raising a family to being at home and not leaving the house much due to anxiety and pain symptoms. I do try to find a positive every day and smiling in the mirror helps along with the CBT counselling 😊. There is a rheumatology helpline answer phone service and I have used this once before when the pain was worse and they did get me an earlier appointment but I'm not sure if it's for general enquiries. I thought GP's would be the first line of enquiry for new symptoms but I may have got that wrong. Can i ask if you are on any treatment and if it has helped you?

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Happy43 —

I would agree completely with Tynemouth’s comments. These risk-benefit decisions on major medications are exactly what specialists are for. You, of course, may not have realized this when you caught your doctor on a bad day.

I have never been on major medications but know that even now that I have some nerve involvement, the doctors very carefully weigh out risk. I agree you might want to have a second opinion, particularly because you are a complicated diagnosis, at an academic center.

You are not responding to the medications they have tried, so it is not surprising they are moving to a new immunosuppressant. I know you will get feedback from others who have had experience with the medication.

Take time to process all that has transpired. I can understand why you would feel low.

K

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I read a little more about you UCTD And just like in Lupus, “vitamin D” seems to play a very important role in keeping you healthy.

Our levels for vitamin D should be around 70 - what are your vitamin D levels?

It does makes a big difference in supporting our bodies when our levels are over 60 and 70, for most people anything over 32 is good – but it gives us the right ingredients to fight off illness for us and keep our autoimmune disease at bay.

rheumatologyadvisor.com/hom...

Very good article about UCTD- quite a few ads on the page though sorry 🙄

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Hi Happy43,

If your GP has been very good up till now then it’s perhaps a little unfair to judge them after 1 bad appt.

GP’s are generalists, your lists of possible diagnosis are all rare. Azathioprine is a Consultant only initiated medication and a GP wouldn’t have the knowledge or experience to discuss to risks and benefits with you.

Was ANCA associated Vasculitis ever considered given you are MPO positive?

I would absolutely ring the Rheumatology helpline and explain your symptoms, that’s what they are there for. I wonder if your local Rheumatology Dept have the knowledge and experience to diagnose you and whether this is really the issue here.

In many ways the treatment of auto immune disease can be as debilitating as the disease itself. They are toxic medications and as such come with a range of possible side effects. We all have our own thoughts on risk V benefit and side effects, but the bottom line is we have to choose between treatment or none as they are the only options available.

It’s a hard road to journey, I sympathise as it took me 4 years to get a diagnosis after 9 second opinions all over the U.K. Definitive treatment has made a big difference to my quality of life and symptoms. Perhaps it’s time to seek a second opinion elsewhere given the situation locally with Rheumatology.

Best wishes

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Hi Tynemouth thank you for your reply, yes I have had a CT sinus scan in December 2017 and a referral to ENT showed no evidence of active vasculitis which is good. I understand your comments regarding GP's being generalists, it was the choice of words that shocked me although I have in the past received a consultant letter which stated 'I'm not sure what the future holds for this lady' a few years ago regarding PBC so I shouldn't be surprised I suppose! They all seem to agree that I'm an 'interesting case' based on my various antibodies and I know from reading on here that it can take a long time for for diagnosis. The possible PBC diagnosis resurfaced last year among many tests and this is now of concern to me as it involves invasive testing again which I already went through three years ago. This combined with the thought of more possible pain (see my reply to panda2) from taking more toxic immunosuppression is worrying me and this is why i went to my GP for advice. I will ring the advice line as suggested by many of you.

Many thanks

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ENT aren’t the best people to rule out Vasculitis as they are surgeons, not medics, unless they see a lot of patients with Vasculitis or have a special interest/ are attached to a specialist Centre their knowledge base is often limited.

I hear what you are saying about medications and invasive testing but consider it this way. You are very symptomatic and rightly are concerned about your symptoms yet at the same time you are saying to your GP I don’t really want any more medications or investigations. That puts her in a very difficult position and I suspect that’s what prompted the “ hand of cards “ comment.

Not all immunosuppressants are oral, many are given IV or by injection. It may be that your abdominal/ bowel issues are linked and will actually improve if you receive definitive treatment. You are essentially in limbo at the moment, the Rheumatologists have been unable to diagnose you, I am sure your GP is just as frustrated as you are.

If my diagnostic odyssey taught me anything it’s that no one will care about my health as much as I do, sometimes we really need to push for answers and ask for a second opinion. I suspect you need to be seen at a large, specialist centre where they see a lot of patients with auto immune disease and are skilled in diagnosing when the diagnosis isn’t immediately evident. Steroid injections are like putting a plaster on a fractured leg, they don’t treat the root cause.

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Tynemouth has brought up an excellent point, Happy43! Oral or injected immunosuppression! Yes, there are different options out there.

In my case, I've had a hell of a time trying to up a dose of Mycophenolate. Diahrrea up to 6x a day. And I tried a different version last year (Myfenax) which was worse. My Rheumatologist said she would give me Myfortic (a gastro-resistant gel tablet) as another option. And that is 3 versions of just one of the immunosuppressants out there! So oral or injected could be the way to go! You've really worked hard at trying to limit your body reactions with changes in diet, the rest is going to be up to what works for you and what doesn't. And you do really need advice and hand-holding through all of this. Unfortunately, it's probably still going to take a long time...

P x

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Yes you are absolutely right with the interpretation of the 'hand of cards' comment. I could hear myself saying I need treatment but I don't want treatment if that makes sense. I'm not ashamed to admit I'm scared of a lot of this uncertainty and without being disrespectful, unless you suffer from anxiety you may not understand how uncertainty can affect the mind and actions. I hope I'm not speaking out of turn and I am very grateful for your suggestions and advice. I do think the frustration is aimed at Rheumatology and not me but as PMRpro rightly said, there are patients that would hear it was aimed at them and this was my point about choice of words. I am based at a specialist CTD clinic in Leeds after referral from local Rheumatology in 2017 and they have been very helpful, unfortunately there are backlogs in appointments and I was unsure of the advice line before but reading everyone's replies it seems sensible that this is the way forward between appointments.

Many thanks

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I realise my responses to you have been very brisk and concentrated on the practicalities. Whilst I was on my 4 year diagnostic odyssey the local Rheumatologist said my symptoms were “ significantly psychological “ which made getting my diagnosis even harder.

I have a life long history of anxiety and depression so do have a little understanding if what you are going through. I was fortunate to get a referral to a clinical psychologist whilst going through the diagnosis process which was really helpful.

I used to leave every medical appt in tears, mainly of frustration and anger. I had to toughen up, concentrate on what I wanted to achieve and how I was going to do it. If I could have lived with my symptoms I would have. My GP was supportive but as he said if Consultants couldn’t figure out what I had then what chance did he have.

In the end I got a copy of all my clinic letters, blood results, scans etc. Wrote out a treatment and symptom timeline and made a list of my current issues. I printed this off and gave a copy to the Consultants I saw. I tried to actively manage the process as much as I could, I asked Dr’s to document concerns in my medical notes and their responses to my concerns ( as evidence ) .

Sometimes we need to spell things out, do the Rheumatologists really understand the extent of your symptoms and the impact the uncertainty is having on your life?

None of this is fair, in a perfect world we wouldn’t have to push in this way but it’s sometimes the reality.

I don’t mean to be insensitive, apologies if that’s how my responses have read.

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No apology needed 😊. You have been very helpful with your advice, especially regarding IV/injections. I was unaware of this and it may be good for me to discuss this at my next appointment. I'm sorry you too have suffered with anxiety and I relate so much to your account of medical appointments and being told it's psychological. My GP has often voiced this opinion and I find Rheumatology appointments difficult but now I type out a list of any new symptoms and a few questions to prompt me. I find this helps. I know I need to be more assertive, something I need to work on and maybe with extra knowledge from everyone here i will begin to be able to achieve more!

Thanks again

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Great advice and sums up my similar journey. It took me a while to accept that some of my treatment is debilitating but then i get what i call "the kick back" ie feeling the benefit. I have to juggle my infections as have CVID too. But yes 2nd , third, fourth opinion whatever it takes to get stable. Gps are frustrated for us sometimes and it comes over the wrong way. xx

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Oh my dear!!!

You are absolutely right to be shocked and Kay is also exactly right in her response about your deserving more compassionate care than that! This was an awful experience for you and I imagine you might be licking your wounds for some time to come.

When I was first seen by my Rheumatologist, she told me very explicitly to see my GP for any concerns. So I duly went to my GP when my symptoms arose. My doc knew absolutely nothing and was always in a rush to move me off or just review my medications or refer me somewhere, anywhere. I think the fact is our diagnoses scare our doctors. Someone reported here a year or so ago after going to a Lupus convention that the average doctor has only one Lupus patient in a lifetime. My GP had never even heard of UCTD. Like your doc has said, it's possibly not her place to talk to you about Rheumatology prescribed meds (though I've since found a different doctor who will with me), but like you have rightly said, then who are you supposed to talk to??!?!!!! The way your diagnosis and appointments and medications are being presented to you puts you in a ham-strung position. As well as Kay's great suggestions about ways to approach or walk away from your GP, what about going on your Rheumatologist's cancellation list? Especially since you're overdue for your original appt.

Just today I was granted a cancellation appointment for Dermatology, which is a way over-prescribed department where I am. I only called the booking office on Wednesday and when they said my May appointment would probably be July (which I knew meant at least Sept judging by the previous year long wait for an appt), I told them my need and asked if there were cancellations. Eh voila! In 2 days I got a call and in about 10 days I will see them! If you can do last minute and free up any time of day, you might find you can get to your Rheumatologist earlier than the 6 months time frame.

I only plucked up the nerve to ask for this after my last Rheumatology appt, when I was told that if I had any trouble before my next appt, there were always cancellations. She also told me to really press with Dermatology because they were notorious for pushing people down the line if they didn't speak up. Hard to speak up, I know. Especially since your recent experience, but maybe let that be a guide for you to rise over the level of doctors who are unable to care for you correctly.

And if you are really wanting a thorough discussion about your meds and their side-effects, I've been sent twice now to a Rheumatology Pharmacist. He was fantastic! And I knew he was a direct link to the Rheumatologist. He even got some rare test results for me off the hospital screen so I didn't have to bother my Rheumy about them. If there's no Rheumatology pharmacist, what about speaking to a pharmacist at a local chemist? They are often very helpful and can be a bridge in the interim.

Kay and I are two fellow UCTD-ers... You've got good company here -- and there are plenty more of us! : )

All the very best with getting what you need and getting through the emotion of getting what you really didn't need...!

Panda x

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Sorry, missed yours and Tynemouth's responses because I was writing a book! Ditto to what Tynemouth has said -- call the helpline. I was shy to do this at the beginning. But I would do it in a shot now. Not shy anymore.

Your second try on Hydroxy, was it a different brand? Zentiva? Or did you try the same one twice? Just mentioning because the Quinoric brand, though poses no problems for some, can be pretty rough on others.

Px

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Hi panda2 thank you for taking the time to reply. I can't remember which brand of Hydroxy I was given but I suffer with stomach/gastritis issues I assume due to GAVE (watermelon stomach) and I'm taking 80mg Omeprazole and 150mg Ranitidine daily to treat this. I've had numerous endoscopies and two procedures to seal leaking blood vessels which is why I have iron deficiency and. I can't even take ibuprofen for this reason and rely on paracetamol for pain relief. This is really where my concern for immunosuppression comes in because I understand Hydroxy is the first line of treatment and I can't tolerate that so I am cautious about trying more toxic medications. I had a very bad episode of gastritis and inflammation of the bowel last year and i lost three stone. Subsequently my diet has changed massively, I can't eat most of the foods I used to love and I've stopped eating meat and drinking alcohol. I have to say I have felt better for this so there is always a positive in everything! I will call the helpline and ask about cancellations, thanks for the advice.

X

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Your complex reactions to medications would be all the more reason why you are in deep need of having someone work through your medications with you. Your gp should really know that... And if she's not the one to do that, a suggestion would have been nice. I really hope you'll be able to find the answers you need quickly.

P x

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I could not take hydroxy but have done well on a more toxic drug. I think those of us with MCDT etc just have to try and find what suits us best. Difficult but when you find one that helps really worthwhile. xx

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No wonder you are reluctant to go on stronger medication. There are are many things that make treatment of autoimmune disease difficult. In order to help us they have to dampen the immune system. That is no small thing. So the medications can have big side effects. Then you have to add that people with autoimmune disease have hypersensitivities, which can make drug reactions more common. The good news is they are doing a much better job of keeping people functioning without the “plaster” that Tyemouth mentioned.

Let’s hope you benefit from one of the medications. You are doing a lot already to help yourself.

K

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Yes, I forgot to mention that there are quite a few UCTDers on here. So don’t feel alone! It is a real diagnosis and does not mean they don’t know what is wrong with you.

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Hi. I feel what your saying as withbetween appointments I do believe in some rheumatology departments they a have a system we're you can ring and speak to the nurses whocan then advise and or pass on info to your consultant. But mostly I have found I put up with symptoms my gos seem to have no clue in how to treat me. So sometimes I feel am on a roller coaster going down hill so just waiting for that to stop and then I’ll get treatment or medical ears that listen? I do believe if you go on the hospital website and look under the rheumatology it should show what service they offer with phone number for you to ring! I hope this is if some help 😀

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Hi Loopyloo43 thank you for your reply, I agree that the way forward is to either wait until the next Rheumatology appointment or ring the advice line. I have done this before but only when I was in a lot of pain in February and they did manage to get me an appointment and I had a steroid injection. I wasn't sure if it was for general enquiries. I have the same roller coaster feeling, I just want to get off and never get back on 😂 but I know that's not possible. I'm sure I'll bounce back from the GP visit, we have to from situations in life don't we otherwise they can get the better of us!

😊

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I too would call rheumy line . xx

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Personally, I would put in a complaint via the senior partner and practice manager. She may be frustrated - but her job is to provide that interface since she has a level of expertise we as patients can't have. If they can't do that, then the least she can do is be kind, and that wasn't kind in any way shape or form. If what you have reported is really what she said it is tantamount to suggesting the ultimate way out and if I can hear that, there are patients who would hear that being aimed at them and act on it.

I do agree with the other comments too but as the person on the receiving end of some major medication adverse effects, we do need some help and reassurance from someone. As an expert patient in my own personal a/i version, I still ended up with a somewhat interesting (and distressing) experience last week - a repeat administration of i.v diazepam had the same effect as the last time (there's a surprise!) and it has resulted in a 10 days (at least) stay in hospital and an urgent insertion of a pacemaker. Don't misunderstand me - it has precipitated an action that I suspected was going to be necessary and now that is done and dusted so in that sense it was good. OTOH it could have been less traumatic.

I'm in a different system, my GP is there the same day as long as I am prepared to wait and she will always be kind - and take as long as I or she needs. The system does also allow for me to have a fair bit of choice as to which specialist I see so I can make sure the appt is for a communicative one but I will have to wait nowadays. But the feeling of security is a major part of me being able to manage things better myself. There are a few doctors who treat me as an equal - and somehow that upsets a few of the others. It can never be perfect - but it can be better.

Everyone has a bad day, some have more than one. As long as the air can be cleared and the differences accepted so they don;t form a barrier that is OK. But otherwise ...

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Hi PMRpro thanks for replying and I hope you are feeling better after your recent experience. What I wrote was indeed word for word and I agree with you that many people could possibly take that in a different direction. It's only because I am quite resilient despite the anxiety and the CBT counselling helping massively that I am not feeling that way. I agree that a feeling of security is very important to self management, I will have to adapt to not thinking i can go to my GP unless it's non UCTD related and start using the advice line if necessary instead. It's been a wake up call but maybe a different mindset is required now!

Ps my partner does want to make a formal complaint as he's been the one through it all with me 😮

Many thanks

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I'm with your partner on that - all the way. You may have - just as I would - been able to contextualise the exchange, but she could have said that to a lot who couldn't. After the week I've had with a few very insensitive plonkers I'm feeling particularly touchy on it and very aware of the importance of bringing it to the surface. It was a very small minority but nevertheless Monday/Tuesday were a very distressing experience and it has made controlling things all the harder.

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Hi Happy43. I am so sorry you have been treated this way and that dr ought to be ashamed of herself. I have had similar responses from several of my drs so I know how upsetting it is. First of all you deserve to be treated with respect and understanding as your not well and need medical help and guidance. The problem is after a while drs just give up and once they realise they can’t cure us just want to leave us to it. They seem to get pretty nasty when you can’t take the medication, ask questions, see them more than once a month or have any medical knowledge and want answers as they just want you to nod yes and no and take the pills regardless of serious side effects effects or damage that the medication can do. It keeps thinks very simple for them so Keep a diary of all your symptoms and medications and try and research as much as possible on your conditions plus get all your medical files from every department that has ever seen you. Read through it all as you may just get answers as I got mine and found so much information and discovered results from tests that drs told me I was fine but the reports said otherwise. Luckily this is a great site with lovely people who can understand what’s going on as they have probably been in your situation or know some who has. I would try other drs and maybe private consultations if you can afford it. I wish you all the best as I sometimes don’t know if the symptoms and illnesses are the worst things to deal with or the lack of understanding and indifference from the medical profession that’s the hardest to cope with. Try and get a friend or family member to go with you for tests and appointments to see if that helps you. I take my son who tries to explain how unwell I am and if we don’t like them I try to look elsewhere. It’s awful you have to do this as you should be able to get the care you need to get well and manage your symptoms. Don’t let it upset you as it can make you ill. I know as I now dread any visits and I have struggled on alone with no care for quite some time now. You definitely need someone to back you up on any future appointments. I hope you find a really nice dr who can be more supportive. If only they realised the damage they do they wouldn’t be this way. Take care. Elena. 😀

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Thank you Jeromicus888 for your thoughtful and helpful reply. I have been keeping a diary since December last year when things got worse and I believe this helped a great deal at my appointment in February when i was given a steroid injection and they finally discussed future treatment. I do take my partner to appointments but he's not a man of many words 😂 so it's more for moral support than anything but it helps! The doctors at the CTD clinic are very helpful and I realise I am one of a number of patients who don't quite fit the criteria and therefore it's more difficult to address but with time I'm sure I'll get there and be able to tolerate some treatment.

Many thanks

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Fingers crossed you get answers fast as you deserve top class treatment and to be fast tracked to better healthcare. Let us know how you go on. Have a great weekend. Cheers. Elena

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Excellent idea to “take someone with you”, it gives you a second set of ears and it may make the doctor feel more respectful of you with someone else in the room 🤔 and not so dismissive.

Great you were keeping a diary - take it and go over it with “all the symptoms” you are experiencing.

Take pictures of any part of your body that has a “rash or swelling or shows redness, etc.) that you are concerned about – because the next time you go in, it won’t be there – and that way they can see for themselves the difference in the picture of what you were trying to explain of your symptoms throughout the month.

Our disease can be so confusing for doctors because it can mimic Lyme disease, Lupus, and your current UCTD, etc. we have had some friends that ended up with MS after the doctor thought it was Lupus, some might have Ehlers-Danlos disease ( Extreme mobility in joints), etc

And with Lupus, it is common for us to have other “overlapping Autoimmune Diseases”. Fibromyalgia, scleroderma, Sjogren’s, irritable Bowel (IBS), etc

rarediseases.org/rare-disea...

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Thank you for your reply. I never thought of Ms or Lyme disease I must do some research as drs don’t know what’s wrong with me. My son and husband will now be attending each visit in a bid to get someone to listen. Yes thanks for the advice on photos as I can add that to my diary. Hope your having a great weekend. Cheers. Elena.

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Hi there. I’m sorry to hear about the frustrating and upsetting impasse with your GP. My experience is that in general I am more knowledgeable about my own conditions than my GP - lupus, APL, Sjögrens and raynauds. I actively use the rheumatology helpline set up for Patients to alert rheumatology about changes/ escalation of symptoms, seek expert advice, or changes to lupus medications. I only use my GP when I have a symptom that the GP can treat eg antibiotics fir a UTI or chest infection.

I was controlled well on hydroxychloroquine and NSAIs with occasional steroid injections for 15 years but after a major flare found that this regime no longer worked and got quite sick. Through rheumatology I started methotrexate ( an immunosuppressant) in conjunction with hydroxychloroquine which helped and now I also have rituximab infusion every 9 months. This combination is working very well for me. On the rare occasion I get a bit of a flare that is managed well with a course of oral steroids, initiated through contact with the rheumatology helpline. If you have access to such a helpline ( usually run by nurse specialists) I would urge you to use it.

I have found that being able to access expect help myself through the helpline has given me an important sense of control. It also reduced the anxiety I used to feel in the early years worrying about Who would I turn to if I had problems. I hope that you have a similar service available to you. If so, don’t hesitate to use it and don’t be too afraid of immunosuppressants - they made a really positive difference for me.

I wish you well and hope you get to see your rheumatologist soon. X

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Great post. I think it takes us a while to get from the stage of diagnosis, to right meds and then with more understanding from gps, consultants etc hopefully our stress etc reduces. XX

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Such great advice! You have the system down. K

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Thanks KayHimm- I’m lucky to have a good local service, and know how to navigate it. Wish that were the case for all 😊

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Thanks for the advice I will call the hospital to see if there is a helpline and to see where I go from here. Have a great weekend and I hope it’s a good day for you. I don’t know how I would cope without this group. Thanks again. Elena.

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I agree with others about trying for a cancellation and speaking to someone on the helpline.

I had a similar response once from a GP but it was directed in strong language and much frustration at Rheumatology rather than me, when the GP said he simply didn’t have the training to help me and could only act on their advice. He rang them and I was offered a very swift appointment as well as a couple of panicky calls from the helpline, although the waiting list was apparently so long.

Having said that, your GP should not have treated you in that way at all. I agree with Pro that a complaint is needed.

Meanwhile you have my sympathies and hope you will accept a cyber hug from a stranger.

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Thank you Lupiknits, yours and everyone else's advice and help are really appreciated.

😊

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My pleasure x

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Forgot to say your cyber hug is very much accepted too!

X

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What a terrible way to be treated...there should be shared care agreements between your rheumy and GP setting out your GP's responsibilities for the treatments. Here's a typical one, including GP to 'Monitor patient’s response to treatment': (http://www.birminghamandsurroundsformulary.nhs.uk/docs/esca/BSSE%20APC%20ESCA%20Azathioprine%20RA%20&%20PA.pdf?uid=343147016&uid2=20176913123783)

All the best xxx

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No shared care in some parts of the country and the issue here is that there is no diagnosis or treatment apart from a steroid injection.

Shared care is great for ongoing immunosuppressant monitoring though such as routine bloods.

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My rheumy had no SCA's but I sent him the NICE guideline for DMARD SCA's...and now he does :)...yes, the Azathioprine SCA lists the bloods monitoring by GPs. xxx

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Hi eekt thanks for the link, I can't seem to click on it. Am I doing something wrong?! 😂

X

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Sorry! here's a better link (EEK! I think) or Google shared care agreements azathioprine and they will come up: ljf.scot.nhs.uk/SharedCareo...

Here's hoping your next GP appointment will be much better....lots of useful advice here! xxx

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Thanks for this, it seems my GP was right in saying it wasn't her responsibility to discuss Azathioprine with me but she could have been nicer about it! No need to continue with her following comment. Thanks to the kind help and advice from yourself and everyone who has replied today I already feel better about what happened yesterday and feel able to move forward more positively now.

😊

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Living up to your name! That's good news Happy, moving forward is what we like to do! Remove that GP comment from your memory so you don't end up with medical PTSD, and upwards and onwards! xxx

PS a more mepathic GP could have provided a little counselling on Aza rather than just a swift rebuttal! It is after a question of balance, if it's the right time to take what is quite a harsh drug

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Agreed!

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😂 an empathic doctor would be even better!...ah, laughter is the best medicine! Stay strong and be well! xxx

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😂😂😂 x

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I think your GP was out of order. I am sure it is frustrating for her to not have the knowledge to be able to help you properly, but that is not your fault (or hers, to be fair). You have no choice but to visit the GP as your medical issues are not being treated properly due to the long waiting list (again, not your fault). However, as your GP has always been great before perhaps she was just having a bad day. GPs are overworked and must get fed up with their jobs (I wouldn't want to do it!). This is, of course, what she is paid to do and, again, is not your fault if she was just having a bad day. She could be suffering from depression, had a row with her partner, child, parent or have someone close to her pass away or be getting a divorce. Or she could just have been completely out of line. Perhaps you should see a different GP at the surgery or give her another chance. It is very easy to take it personally (if it had happened to me I would probably put a complaint in straight away as I would have been mortified and would definitely have taken it personally!) As an onlooker it is much easier to look at it from different angles and give your GP a get out clause which she may well not deserve. I have to add, if it had happened to me I would be really concerned about visiting the surgery again and would be extremely upset. I feel really sorry for you, but am hoping that my other possible explanation of her awful behaviour may make you feel a little better.

Good luck and, as others have said, post any worries about meds etc on here as so many people here have personal experience of side effects etc and may be able to offer some really helpful advice . And I have also been diagnosed with UCTD x

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Hi HedgeEnd and thank you for your lovely reply 😊. I agree with everything you say about GP's having a hard job and in the past she has mentioned frustration at Rheumatology not me but this time the comment about the hand of cards felt personal and probably that's why I was shocked! People on here have been very friendly and helpful and I'm glad I posted, I do feel better.

X

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Perhaps your GP was having a crap day. Perhaps your GP is as frustrated as you about the length of time specialist appointments take. I know I have been very snappy with my GP during a bad flare up. Don't write them off because of one bad appointment. Next time you go, talk about it.

I'm sorry you've had this experience.

As an SLE sufferer, I gave reporting every change in symptoms or new ones as I'd have been spending half my life at the doctors. Keep a diary for your specialist appointment. Good luck

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Thank you lupie46, good advice 😊

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I think you are like so many of us who have been let down by the conventional system of medicine. Most of us are sensitive souls and we need sensitive treatment not drugs that cause so many horrific side effects.

I went the complementary route and I still use diet, exercise, meditations and life adjustments to cope with the symptoms because I know the drugs affect me so badly; in fact I believe that drugs initiated many of the terrible symptoms I suffered and still suffer from. Vaccines and drugs in childhood and those that my parents took, even before I was born, affected me, I am sure.

If you can afford to see complementary practitioners of good recommendation, experience and character, that is what I would do. I saw a kinesiologist/nutritionist who taught me how to muscle test myself for everything I ingest. She helped to save my life when I was dangerously ill following hospital treatment, the wrong diagnosis and drugs.

Also, when a GP said I needed to take levothyroxine for the rest of my life, I muscle tested the drugs and my muscles were weak - only later to find that I had Hashimoto's thyroiditis which, had I taken the levothyroxine, could have poisoned me.

I also use homoeopathy and herbs. I know the conventional system can't help me and a GP actually said to me that we had come to the end of the road where the conventional system can help me. At least he was honest and I can understand the frustration of your GP at entering a profession to help to heal people when most of the time they are just drug pushers and drugs that use us as guinea pigs. Time for change, but whilst big money is involved it will be slow in coming, I fear.

All the best and keep smiling - that is one of the secrets - the body produces good endorphins when we smile even if there is little to smile about for many. x

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Thank you Cann your reply is very interesting and I have often thought about complementary therapy and this is something I will consider. I'm pleased you have had a positive outcome from it, it shows that sometimes we need to think outside the box when it comes to what we do about our health and to me all options are on the table until I can find the right way forward. I make a habit of smiling in the mirror at myself, it helps and keeps my sanity in this mad world of uncertainty 😊

X

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You sound very much like me, Happy43. Let us know how you get on if you can. I suspect many of us Lupus types are connected to our bodies whereas many aren't these days with us all coming so far from nature and what was naturally intended for us.

One thing I am dreading is 5G with all the scientific research on how it will adversely affect the human race and all life in fact.

I am electro-sensitive now and can't have a mobile on around my body for long and I can't stay in shops for too long with all the wi-fi. I need to keep moving to discharge the EMF's or I get headaches, nausea and pains about my body including fog and fatigue. I know many like me, now, but that doesn't help much - we all do the best we can.

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Vasculitis, Lupus nephritis and other rare auto immune diseases were universally fatal before the advent of prednisolone and other immunosuppressant drugs.

Everyone is entitled to their opinion but it’s important to separate that from scientific fact. There is no evidence to support homeopathy, naturopaths, functional medicine or your views on vaccines, you undoubtably made it into adulthood partly because of the vaccination programme.

It’s too easy to post these types of opinions as a solution to disease, let’s all blame it on big pharma. Auto immune diseases are a spectrum, some are life and organ threatening, all are inherently complex. How we all wish there was such a simple solution.

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I don't think I made it into adulthood even partly due to vaccines.

In my childhood, we weren't given so many vaccines as babies and children are now.

If someone has a strong immune system, they should be able to fight off diseases - that is what an immune system is for.

We have many systems in place in the body to fight infection and injecting bacteria plus all the adjuvants, e.g. mercury and aluminium, etc. directly into the blood stream, by passing the systems, can certainly cause an abnormal immune reaction for some one like me. We are all different.

I referred to other drugs rather than auto immune suppressants; may be I didn't explain correctly, but I was given 2 courses of a dangerous broad spectrum antibiotic that I should not have been given with penicillin allergy in 2000 and whereas my symptoms were manageable before that, although they did deteriorate for a time after tetracycline and amoxicillin in 1994, my symptoms after 2000 almost lead to my death, messing up all my organs especially liver and kidneys, but pancreas and gall bladder, too. I was given little hope of survival and I am sure had I not been referred to Bristol homeopathic NHS hospital where doctors were knowledgeable in both conventional and alternative treatments including nutrition, I would have died.

There was no infection in fact, but pieces of the internal dressing pack left in my insides for six weeks after the surgical dressing was removed and these were playing mayhem with my immune system, so no antibiotics were necessary, let alone those I was allergic to.

I wasn't saying there was a simple solution rather that there are other ways of helping our bodies to heal and healing doesn't always mean eradicating all the symptoms, but dealing with them in a way that suits the individual.

Nutrition is certainly one important way and with all the additives, preservatives, GMO's, etc. it is no wonder our immune systems are going hay-wire. Routine treatment of antibiotics and hormones in animals raised for food is one of the culprits, too.

You have a right to your opinion and I mine.

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Of course, as I pointed out we are all entitled to our opinion, what we aren’t entitled to do is present opinion as fact.

Diseases such as diphtheria and polio are almost unheard of now due to the childhood vaccination programme, both could be fatal.

It’s not helpful to confuse the role of the immune system in fighting infection and it’s role in auto immune disease. We wouldn’t need antibiotics if the immune system was able to “ fight off diseases “ , sometimes it needs help. In auto immunity the problem is the immune system is too active, that’s why it reacts and attacks organs etc as it can’t differentiate between friend and foe. Medications for auto immune diseases suppress the immune system, they don’t make it stronger.

No vaccine is given “ directly into the blood stream “, they are sub cutaneous or Intra muscular, not intravenously.

There is no evidence base to support homeopathic medicine which is why many health boards aren’t funding services any more.

I would absolutely agree about the benefit of good nutrition.

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There is plenty of evidence to support homoeopathy if you care to look for it. Why would millions around the world be using it if it wasn't effective? It may not be effective for you, but there are many whom it is effective for, including me. I was not telling others to stop using drugs if they are effective and don't make matters worse for them.

The conventional system is often too traumatic and invasive for many including me.

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No, there are no high quality evidence based randomised controlled trials that support homeopathy. It’s understanding evidence that’s crucial here and knowing where to look for peer reviewed evidence.

“ Millions “ round the world use all sorts of non evidence based treatments and think it’s efficacious, it’s called the placebo effect! Medicine is littered with practices that were thought to effective, due to bias, yet once tested with a randomised RCT have proven ineffective.

I could post that jelly babies cured my disease, part of that may be that I really like jelly babies and they are non toxic. I may persuade many people to try them who all say the same thing. It doesn’t prove anything though and no one talks about the people who came off treatment and were harmed by jelly babies as a result. Just because we really believe something and want it to be true doesn’t make it so.

Homeopathy, the actual evidence base, I suggest you read it.

england.nhs.uk/wp-content/u...

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I could give you examples of success of homoeopathy and why, but I can clearly see that you are blinkered and that there is no point in even trying. Homoeopathy is nothing like jelly babies and homoeopathy is not the placebo effect. Admittedly, there are probably fraudsters in homoeopathy just as there are in any other, but if treated appropriately with the right physicians it is very effective.

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No you haven’t given me any objective evidence of treatment success using homeopathy other than your personal experience and a statement about millions of people.

There is no evidence to support homeopathy. Why are very few Health boards willing to fund it?

I think we are done here, time to call it a day. Being blinkered cuts both ways.

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In the U.S. money has been going going into research for alternative medicine. None of it has been successful. Research doctors — those working on cancer, systemic autoimmune disease and many serious diseases — are starting to get angry that money that could be used to fund projects with potential is being wasted. I wish I could find the quote from a researcher at Yale who described how he had some potential break throughs in childhood cancer but couldn’t get funded. He mentioned there was funding for some herb that had no possibility of success.

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Homoeopathy has been cut to save money as have other areas of service. I agree drugs work for some and homoeopathy works for others - not blinkered!

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I have only just seen some of your replies in this thread. It's so easy to get sucked in by the mantra that homeopathy is a load of hogwash and unproven.

That's how politics often works.... say something often enough and try to ensure the message is repeated without anyone checking the source and it will become a mainstream belief.

But there are people who have managed to PROVE there is something to take note of with homeopathy

Nobel prize winners even. Who would have known with the constant put downs.

Luc Montagnier - he who won the Nobel prize for co-discovering the aids virus has proved water has memory. That is the basis of homeopathy.

So for anyone who really wants to find out for themselves maybe they should Google Luc Montagnier Water Memory and look for videos or whatever other method they find easiest to absorb.

It goes to show, you really don't know what you dont know. And it will stay that way unless you are open to new information. I wonder just how many are though.

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I know it works from experience and I agree with you overnighthearingloss, but sometimes we are wasting our energy and time trying to convince others who just don't want to receive the benefits. I have loads of evidence of research that has proven it works, but this isn't the place to display all that; there is so much evidence if we choose to search for it.

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Yes, opinion is not fact. I just got an email from Harvard Health regarding anti-inflammatory foods. It says basically to listen to what your grandma told you to eat — lots of fruits and vegetables. There is no evidence beyond a healthy diet to treat systemic autoimmune disease.

Anyone with organ-threatening autoimmune disease is best relying on their doctors’ opinion of the best treatment.

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Living with UTCD can be very frustrating, the doctors are unwilling to put you in a category – it may be helpful to see a different rheumatologist to see if you can get a more specific diagnosis.

Several of my friends have had stomach distress using anti-malarial’s, but for most people it is tolerated very well. I’m sad for you that this is not an option for treating your symptoms. But, The possibility that Imuran may work for you is great. It has been a good option for several lupus patients that I know I am very beneficial to them.

hopkinslupus.org/lupus-trea...

Whenever I have any problems and I believe are related to lupus, I always call the rheumatologist and get their advice and maybe go see them or get them to refer me to someone that might be able to help the symptoms I am experiencing if they feel lupus is attacking A specific organ – lungs, then they would send me to a pulmonologist, etc.

Whenever we get a virus ( Cold, flu, sinus infection, etc. ) it can kick her lupus into gear and therefore we may need treatment like a short stent of steroids just to get the lupus to calm down that was stimulated by the virus. Keeping away from any viruses, all triggers that will throw us into a lupus flare is most important.

Some of the common triggers are:

Sun

Alfalfa Sprouts

Viruses

Stress

Doing “to” much causing “Extreme Exhaustion”- we have to learn when to say no – and listen to our bodies, rest When it shouting to us to “rest”

lupus.org/resources/common-...

This is a good place to look at, we just have to learn to live our new normal – it’s hard to let go of the things that we were able to do before, but living proactively and learning as much as possible about a connective tissue disease or lupus Is very important for us to live a good life.

Having a good relationship with a rheumatologist you trust is so important, you may have to shop around to you find one that you really feel comfortable with and someone you think that is listening to you.

Yes, and I agree with the ones above – “staying positive”, learning to do meditation, prayer, looking into alternative treatments in addition to your medicine such as “massage therapy” for muscle stimulation and better blood flow to our joints ( not a feel-good massage) , low impact yoga, etc. are all good ways to help us live better lives.

lupusuk.org.uk/medical/gp-g...

It is scary in the beginning, we have a challenge – but we can fight this challenge head-on with the proper knowledge and attitude as we work with our doctors to find the right path for us.

Praying for you to be strong, and for your new life to be as fulfilling as you want it to be – being sensitive to yourself along the way.

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It is not really « unwilling » to put you in a category but that the disease has not evolved into a specific CTD or that you fall into a discreet category of UCTD and likely stay there if you don’t evolve after a few years. See HSS, undifferentiated connective tissue for a helpful patient-oriented description. UCTD can be frustrating, particularly when you think doctors don’t know what they are doing! Explanations help and realizing they treat symptoms, not names.

K

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Thank you Djlr for your advice and information links. Everybody has been so helpful about my post, I already feel more confident about contacting the Rheumatology advice line in future 😊

Many thanks

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That is great! And remember that these things are not always clear cut. I certainly have called the rheumatologist’s office to be told to check in with my internist first, but also gone to the internist to be sent to ENT, back to the rheumatologist, then sent to the neurologist. So never blame yourself for not knowing who to contact, who to see first or whether your symptom is CTD related or not.

And post here. Many will have experience and put you in the right direction.

So glad you feel supported. We have all been deflated by doctors’ visits.

K

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I meant to ask you about the symptoms you had and how you were diagnosed for nerve involvement? I have felt nerve symptoms since last year (or what I think may be) but they have always been put down to vitamin deficiencies by different GP's. The deficiencies are being treated now but I'm still curious about nerve involvement and this was also something I mentioned yesterday to my GP and she said to tell Rheumatology.

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I’m really sorry to hear that this happened to you. Your GP shouldn’t be there to take her frustration out on you. Before my full diagnosis I went back to my GP multiple times and after, as I only saw my specialist every 6 months.

My Dr Surgery meant I saw a few GP’s not the same one always. The one I saw the most however, wrote letter to my specialist to move forward on appointments, when I had new symptoms. In addition to (looking up) and prescribing me things to help the pain.

I know our situations are different but if you can’t get ahold of your specialist when new symptoms appear. (Which also I think your should call and try to get see to sooner, which I know isn’t always that easy). Your GP should be there to support you regardless of their lack of knowledge on the specific condition. And if this one is not doing that, then I would advise seeing another GP and having them liaise with your clinic to get you seen to when you need to.

You don’t have to explain your reason why you want to see another GP, if the new one is helpful then next time request them.

Hope this helps a little, sorry for the essay.

Sara x

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Hi Sarakm thank you for replying, I too have seen several different GP's because you can't always get an appointment with the usual one. There is another GP who has been very helpful and I will be seeing her soon for blood tests to check vitamin D, calcium and iron (she was the one who found these and has arranged further investigation where necessary). I think I will try and book with her from now on although I would still see the other if necessary. I have found that some GP's will go that extra bit further for you and some want you to do your own chasing up etc. It's very hit and miss, surely everyone should be working to the same standard? Your reply has helped, thankyou 😊

X

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I’m glad you have another GP you can also go to, and I really hope you get the help you need.

I am currently at the hospital for my specialist I have just turned up, no appointment to see if someone can see me or give me help, a number or something as the pain is just too much, and I am sick of leaving messages and being put though to automated people.

I’ll let you know if they give me any useful numbers, or advice xx

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Thanks 😊. Did you get any help today? Well done for turning up, I hope they did something.

X

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Hi Happy43 (or trying very hard to be happy against the odds I think).

I was startled when I read this post an hour ago. It tarries so much with my own recent experiences and older experiences too - that it was like reading one of my own posts - only much shorter and more to the point!

I recognise so well this horrible moment when a GP I’ve always liked and trusted talks of “hands of cards you’ve been dealt” or similar - and the subsequent shock and pain. I’ve walked back out of the surgery feeling the ground caving in beneath me.

I’ve relocated a few times over the past 4 years and each time I have been taken seriously at first, only to reach this hand of cards moment fairly quickly. The first time it happened, prior to relocating, felt the very worst. But now I’ve started to spot the signs and go into self preservation mode. I look for alternatives approaches to improve my situation or come here, or both.

Chronic illnesses, especially the rarer types, make our GPs depressed too because they feel helpless and frustrated for us. But also start to dread us as one dreads a friend going through the long process of bereavement. Every now and then the frustration and over-empathy they feel just bursts out of them and they use horrible expressions and temporarily or permanently break the bonds of doctor- patient trust.

I’m not sure we should excuse it when this happens or not. But it helps to at understand their mindset perhaps? And I think, from your replies here, that you do. It does seem like an inevitable turning point in my own experience. As with all friendships and working relationships I think these dreadful moments have to be viewed as philosophically as we can muster.

So I think I’d probably advise you not to complain officially at this stage - but to instead go back and see her with your husband and explain how this hands of cards comment made you feel. I am suggesting giving her a second chance and seeing how she responds. Her response will then possibly guide you as to what to do next.

In my case I had no choice, living on an island as I was back then, far from rheumatology and no helpline or way to contact them, the first and worst time it happened to me. So I then, knowing how much I needed my GPs I tried to spread the load between the three partners. This worked because each GP would do the hand of cards moment in turn and I would avoid them for a while. But then my main GP lost the plot with me about bouncing off his colleagues, saying I was “too complex” and needed to choose between them because having too many opinions was counterproductive for me and for him. This was also upsetting because I saw his colleagues precisely to avoid these outbursts and to take the load off him? But also to extract a neurology referral he kept refusing me. No winning here with inflexible approach I came to realise.

Only a week ago my CTD/ vascular dr said almost the same hand of cards thing as your GP. His words were “you have Sjögren’s which involves intractable fatigue, Sicca, Raynaud’s and small fibre neuropathy. Given your normal autoantibodies (i have +ANA and one equivocal antibody to Scleroderma but he says this is probably a false positive) this is unlikely to get worse - but it won’t improve either so I don’t think there is anything more we can do for you here. You should take up the neurologist’s offer of CBT because it is the best therapy we can offer for people like you with a chronic illness and no pharmaceutical modifier or cure”.

Like you I think of myself as a person who does her best to be positive and meet these comments with what my late mum used to call “personal courage”. But this doctor’s words made me feel abject and I haven’t recovered from this yet. One by one all of my specialists are shrugging and dispensing with me and I feel too ill to just do more than cry after each appointment and discharge. It feels like no one cares at all. Then I think “well why do I expect them to. It’s just a job for them and I’m a time consuming duffer. Why not give me the boot?”. The utter futility sends me plummeting. But I have love to live for so I eventually resurface determined to find another way to at least improve my quality of life.

I saw my GP on Thursday and took my husband with me. I told her about my very recent neurology and CTD appointments and my anxious responses to both.

She thought very hard how to word this because I also told her that I’d referred the CBT as box ticking and had lost trust in these doctors for other reasons so she had to draw breath and not roll her eyes. I pointed out that she would be all I had to ask questions about my Sjogrens and report worsening or new symptoms to if I’m discharged. She got it pretty quickly and clearly does not relish this prospect!

So we made a plan that she would write to my rheum to ask that I’m kept on in the parallel rheumatology clinic at least. For my part I would write to my neurologist retracting my refusal of a referral for CBT. My husband kept things reasonably upbeat but told her that one to one counselling up on my old island home had helped my low moods/ anxiety.

I came out very relieved to have a short term plan but also frustrated that I hadn’t had time to ask about my worsening cough and report heavy nose bleed, ear gurgling and terrible gastritis in case I have chronic sinusitis or gastric ulcer or both. I didn’t ask if I could come back again in a month/ 6 weeks as I’d like to and she didn’t suggest this so I feel that she’s had enough if this arrangement now and may do same as yours if I go back.

Now I’m mulling over everything, feeling that after 8 long years of this rheumatic journey I’ve got nowhere at all and been a source of frustration to all my doctors to boot. Like you I’m now suffering from anxiety and a fear that I have nowhere to turn about symptoms that are multiple and life changing even if they aren’t life threatening.

This awful chicken or egg scenario makes me feel doomed and I keep getting tachycardia with twitches and tremors - never knowing if this is more of their “functional” (or my Sjögren’s fatigue) or some new and real progression or infection or other pathology. My formerly dependable inner compass says it’s biomedical as part of active autoimmune disease and inflammation. But then I have their doctor compass now overlaying my own and throwing new doctor speak at me. This is making my own inner compass waver or even swing about madly - giving me the sense I’m in some scary parallel universe where all that I once knew to be true has been wrong all along. Who to trust - the new and very anxious me - or the medical profession? It’s not a great place to be I know but, as Tynemouth has done, I’m trying to steel myself up and be more pragmatic and tough with myself and others. I can’t really see that I’ll be anything but thin skinned but perhaps learning the hard way how to avoid doctors as much as possible.

I’ve tried and failed to tolerate 5 disease modifying agents including injectable Methotrexate and Azathioprine.

So of my own initiative I’ve arranged a private appointment with a Scottish pharmacy who will prescribe a treatment used sometimes off licence where others have failed or not been enough. It’s called LDN and I’ve long been aware if it but never had the guts to try it. I asked the CTD dr about it last week and he hinted that it might be a good way to go but he can’t recommend it himself. Similarly I’m going to push for a trial of B12 injections when the time feels right.

Also a lovely friend from this community has researched and found a private/ nhs rheum in Glasgow who has a special interest in Sjögren’s. So we have cancelled a few standing orders to save up to see him for a one off appointment at the end of the month. These might prove fruitless but I do feel much better for taking the reins back in my own way - even if it costs ££££. At least this way I can talk things through with LDN doctor and a rheum who hopefully knows more about Sjögren’s than CTD drs and also has the luxury of more time to talk things through with me.

Sorry for a very long reply but your post moved me to write. Please take care xx

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Hi Twitchytoes sorry for the delayed reply, I have been spending some time with my family, much needed as my partner has two jobs now I am currently unable to work so we don't get much time together anymore. Thank you so much for your caring reply, I am so sorry you have been through a terrible eight years and my current problem pales into comparison with yours. I completely resonate with your account of GP visits and I too struggle on a daily basis with what symptoms are anxiety and what are UCTD. The only advice I can give from personal experience is that CBT counselling has helped me to distinguish a lot of anxiety symptoms and that in itself has taken away part of the constant worry about which is which, although doubt still creeps in from time to time and is still a challenge to control. I too have been experiencing muscle twitches and spasms, numbness and tingling for some time and this is a grey area for me as from what I've researched these can be signs of nerve involvement or anxiety. The problem I have is my GP has consistently told me that all of my symptoms can be caused by anxiety and has been telling me this needs treating with anti depressant medication for a year now and I have consistently refused. I have learned to live with anxiety and there are quiet periods and the symptoms are still there but so far I have been hesitant to ask about a neurology referral as it's been drummed into me for so long that it's anxiety. I hope your experiment with LDN is successful and also your private referral goes well and you get some clarity. I feel a shadow of my former self and I still have days where I wonder what on earth has my life come to but as I mentioned to other replies, I make a point of smiling in the mirror, a small thing but it helps and focusing on the positive things in my life, my children and how I've raised them and my wonderful partner who has the endless patience to listen to me every time I offload or need to wail and weep. I am so overwhelmed by the response I have received to my post, it was never expected and it feels like I have had a huge cyber hug from a lot of people I have never met before but have made me feel so much better. I wish I'd done this a long time ago. Thank you again for taking the time to reply.

😊 (me smiling in the mirror every day!)

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🤗😎🤗

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Hello Happy43 you sound some what like me.I was diagnosed with Pbc about 12 years ago ,for me that diagnosis was relatively straightforward I had gone to see rheumatologist with tiredness and aching joints and muscles.They sent me to see a liver doctor the pbc was thought to explain all symptoms.Then about 3and a half years ago I became much worse with disabling periods if muscle joint and tendon pain with flu like symptoms.This took almost 3 years and a number if rheumatologists to get anywhere with as well as dermatologist and ENT referral,by the time I met my current rheumatologist I was very unwell.I have ANCA and mpo posative like you and ANA.My condition is still not fully named has elements of sjogrens ( damaged salivary glands), some symptoms of vasculitis, and possibly MCT.But my rheumatologist having tried steroids by injection with really obvious results in my symptoms and blood tests, started me on hydroxychloroquine and Azathioprine I feel so much better.I was worried about the Azathioprine and it was oked by my hepatologist before I started them, but I haven't had any problems and my monthly blood tests look much better for inflammation than before and I feel so much better.Before this I was quite desperate as I felt so ill, and I understand how alone you must feel that's where your GP should be helping.I don't think your general practitioner us being very helpful or kind she maybe not able to help with treatment, but sympathy and compassion costs nothing and if she doesn't have that why is she a doctor?My GP has been wonderful in fact over the years she referred me back to rheumatology 4 times as they kept discharging me!I hope you get the help you need soon don't give upI hope things get better for you soon.jane.

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Hi jane1964 sorry for the delay in replying and thank you for your response. My situation does sound a lot like yours and I forgot to mention an ultrasound of my salivary glands last year showed signs of early sjogrens aswell. It's nice to hear about similar circumstances and also your successful treatment with Azathioprine. The PBC diagnosis has been a challenge for my gastroenterologist as my liver function tests are normal but a recent ultrasound and fibro scan show a coarse and stiff liver suggestive of PBC. They want me to have another liver biopsy to confirm but the first one was inconclusive and the procedure was painful. An MRI scan was also inconclusive. It's good that your GP has been so helpful, it must be lovely to have the feeling that you have support on a more accessible basis than waiting until the next three or six monthly Rheumatology appointment. I think I will feel more confident at my next appointment thanks to everyone's advice and support here.

Thanks again 😊

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I also forgot to say I too have developed muscle pain, weakness and stiffness since December last year, very painful and wakes me up at night often. The steroid injection improved this and joint pain greatly. I have noticed flu like symptoms during any illness/virus or during stressful times or when I am fatigued. Sometimes I say to my partner I just hurt all over it's that bad.

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Hi interestingly my liver function tests were also normal at first for about first 4 years, but then they became elevated urso has worked well for me.I found just how ill I was otherwise crept up on me so slowly I just did less and less and felt worse and worse azathioprine hasn't been a cure but I do feel much better.Good luck Jane.

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I developed a type of neuropathy quite early on at the same time as being misdiagnosed and treated for RA. Mine is called small fibre neuropathy - which is found in about 50% of Sjögren’s sufferers. It can only be diagnosed by skin biopsy of the affected areas - but biopsies were normal/ negative 4 years ago.

When nothing shows up in tests other than high levels of systemic inflammation - there is an implication from doctors that it could all be psycogenic - or what they call functional overlay.

Personally I think, given the severity of my allergies and chemical sensitivities over my 56 years - I probably do have other conditions underlying these neuro symptoms.

But then I feel that many investigations I’ve subjected myself to have all been invasive and disruptive and even the positive results have been disregarded or shrugged off. So increasingly I’m not reporting pain or sensory issues for the reason that anxiety breeds greater anxiety as you know already. To be honest I wish I’d never been referred to neurology. I think my old GPs knew that this would take me nowhere anyway - they just used to say I had something rheumatic occurring and my neuro symptoms were idiopathic and in time I would just get used to them. They were right to an extent and I think the 3 neurologists have all been a curse.

Once the doubt takes hold in doctors it seems to become infectious. So it would have been better for me just to blame my confirmed Sjögren’s and keep my suspicions of other overlapping issues to myself from now on as there are no treatments for them or for Sjögren’s anyway. And I don’t see this changing any time soon.

This might not apply to your neuro symptoms and UCTD of course - best report them to your rheum. But I have learnt that the overlap between autoimmune diseases, allergies and hereditary conditions are certainly far more complex than doctor’s yet understand. I don’t think my neuro symptoms are all related to Sjögren’s, hypothyroidism, anxiety or any other conditions. But these do all feed off each other I’m quite certain. X

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Mine is rare - autonomic nerve disorder. I had orthostatic hypotension for a long time that was diagnosed clinically. Then, I had a bunch of weird allergic-type symptoms and started vasodilating after all sorts of stimuli. Tilt table had been positive.

Perpipheral nerve involvement is not that uncommon. Others may be of more help. I think certain pain features is common. They can do lots of tests, so telling the rheumatologist is a good suggestion.

Don’t hesitate to tell us your symptoms.

K

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I know its disconcerting when you feel you cant advocate - for all the complex and anxiety provoking thoughts running through you're mind right now - and its possible you're GPs - not so gentle reaction may reflect her anxiety for you ?. Its possible that she was being abrupt because she was upset (for herself) but also trying to advocate for you - given you have a long wait to see another specialist and the only option you have to stay well in the meantime is to take the medications.

I'm in a similar boat at the moment - things a bit up in the air - a long wait for another appointment - so all I can do is take what I've been told and hope for the best.

I've had SLE lupus for 41 years and suffer anxiety on top of 'Doctor anxiety' too and unfortunately sometimes the best medical advice can come's in horrible, blunt - or even abusive form. Awful, but true. Try and see the message - and ignore the emotional aspect.

In the long term - for me - Its been important for me to learn to - de - personalise Doctors to some extent to be able to cope with the whole process. Try not to rely on them too heavily for psychological support. This is definitely not always their strongest skill.

Easier said than done, but - try to see them only as a means to an end. What they say is more important than how they say it.

Often the only thing you can do to keep yourself well is to take the - latest specialist opinion regarding medication. From what I've read ? It really looks like you have no choice but to follow - rude instructions - if you want to stay well.

While autoimmune illness is complex - the treatment for it isn't. Its a matter of taking just enough medication to keep the immune system under control - for a certain period of time - then reducing the medications when the illness eases up and its appropriate. At the core - from a Doctors perspective - the treatment is balancing black and white numbers in medication and pathology form.

I'm someone who has taken multiple heavy loads of medications - on and off all my life. Believe me - autoimmune illness is 100 times worse than any harm the medications can do to you. The harmful effects of these medications are over - exaggerated and the truly bad side effects are rare.

Its not just about making yourself feel better right now - its about preventing further damage and getting yourself functional and happy again. And taking these medications isn't necessarily a permeant thing.

(ps. In time, if you don't like the azathioprine - there are many alternatives to that drug)

Just remember - things will get better in the long term.

x

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Hi Freckle1000 and thank you for your reply. Everything you said makes perfect sense and after 48 hours I'm starting to realise many of the points you make. Especially the blunt point! I remember an out of hours doctor once telling me how to use a saline nasal spray in a certain way to clear my horrible sinus congestion. He was rude and blunt and I disliked him but for some reason I went home and did what he said and it was the best thing I ever did and continue to do whenever I have a sinus infection! I suppose it goes to show sometimes a firm approach is better than softly softly. I should know as I have had to take this approach with my children when I have been getting an important message across to them sometimes! I did say in my post I felt like I had been disciplined and that was my inner child responding! As adults we don't expect to be told off by another adult but maybe she felt a more blunt approach was necessary as I was already giving reasons not to take the medicine before even trying it but that's the anxiety taking over. You have a lot of experience and knowledge and I'm grateful you took the time to share that with me.

X

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Wow — you sure got great advice and wisdom from Freckles1000. We all need to take that in! Sometimes doctors can be good for emotional support and sometimes they may have to be stern to break down denial. In the end, we have to accept our diseases and rely on our doctors. That doesn’t mean not questioning but we do have to trust that if they prescribe a medication, they have decided the benefits outweigh the risks. As Freckles says, those decisions are made by guidelines, and those guidelines come from research. You will eventually find a team of doctors you trust.

So glad you started a thread we can all learn from.

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I'm speaking from lots of recollections of rude and blunt messages from Doctors myself. 🙃

X

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Despite having had very severe (life threatening) reactions to 3 out of 5 DMARD meds - I really do agree Freckle. Also I think it’s important to realise that many drugs we are routinely prescribed can be very difficult to come off or can do more harm than is often acknowledged - whereas with DMARDs it is just a matter of stopping immediately if there is intolerance. They are extremely well monitored. However steroids and drugs such as antidepressants and anti convulsants all have to be tapered off very carefully - so for me personally I’m less scared of DMARDs.

Having been left untreated for 15 months now and been refused further immune suppression - I can see where you are coming from. Untreated inflammation like mine is hard to live with.

I’m on the fence a bit about this for me personally because, having failed to tolerate even Hydroxy (anaphylaxis) I also know that my doctors may well be right in saying that the risks are higher for me with drugs than being left to cope without. I think there are lifestyle things I can do to try to minimise the inflammation but I receive no NHS guidance or support with these at all. For instance hydrotherapy, Pilates, physio, dietetics, psychotherapy, acupuncture etc are all unattainable to many in a low income bracket. So being told that I have an untreatable autoimmune disease and then discharged back to primary care feels too harsh. I can see why GPs would feel frustrated and angry about this and might express this very insensitively sometimes. What I hate is being told that things are stable when they clearly aren’t. And when, like me, we are told that bloods are no measure for how active a disease is and multiple symptoms are ignored or baffling to GPs - then this really calls for expertise - which appears to be increasingly absent.

Doctoring surely shouldn’t just about pharmaceutical interventions and yet this is what my old GP told me it is all about. I guess this is why so many look to functional medicine when all other doors close?

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Functional medicine is Just an excuse for Doctors not to deal with medical realities that they just don't understand or have time for. Excuse my French but it's just a gigantic socially constructed pseudo High IQ w**k at the expense of pre traumatised and or marginalised sick people that they want to easily fob off. I was labelled with that one by a neuropsychiatrist who knew I had SLE for 41 years and was sitting in front of Neuro scans that clearly showed some physical problems there....... This functional trend is an absolute sociological obscenity.

I had to access the scans myself to show my GP ( who was shocked ) and get some actual Neuro help.

I know auto immune illness is more complicated than how I describe, but from a basic medical perspective if you get to the point where a GP and specialist are both wanting you to take medicine - you dont ask for clarification - you just do it.

x

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I know and agree entirely about functional medicine and also I loathe the use of “functional” full stop - particularly when it’s used as a euphemism for freud’s long ago discredited conversion disorders.

If my doctors wanted me on another medication I’d not ague or delay. The problem for me is that they don’t want me on anything and I am becoming increasingly fearful of the consequences - because I’m constantly so unwell now.

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I wish I had an answer for you twitchy. I know you've been looking for propper medical care for so long now and have had to put up with such rubbish behavior from so many dangerous many idiots.

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Thanks Freckle. There’s such a post code lottery for us with Lupus and Sjogrens it seems - even for those of us with a solid diagnosis. Heaven help the rest with woolier diagnoses!

I have come to loathe and despise the F word over the years in whichever health context it’s used! Xx

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I feel for your frustration in general, but with regard to the azathiaprine, well that has to be consultant lead. It can cause cancer, so they have to go through all of its pros and cons and get you to sign consent. You have to have counselling before you start it because it can lead to infections. (I’ve just had a life threatening episode of sepsis!)

The hospital prescribe it and the GP takes over the prescribing as part of a shared care package.

You could write to your consultant for follow up advice, but be succinct and limit the questions to one or two.

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Hi Rubylu thank you for replying and giving me another viewpoint regarding Azathioprine. I hope you have recovered and are now ok? This was my main concern when I tried to speak to my GP about it, the fact that it lowers your immunity and possible infection. The other question I have is at what stage are you given immunosuppression? Is it only when there is organ involvement as I don't have that and I wonder why they have suggested it for me? It sounds like a heavy duty drug 😮. Another question for my next appointment.

Many thanks

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With me they do regular checks of the leukocytes to make sure the balance between immuno - suppression and the white blood cells - to fight off infection - is kept even. Its something the Doctors should constantly monitor and adjust according to regular pathology results. It's very much controllable with good monitoring.

x

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I was never told it can cause cancer? My rheum mentioned the 1 in 290 possibility of pancreatitis - which I did have after 3 weeks, misdiagnosed as UTI sepsis at first. But I never had counselling and am unaware that it’s more dangerous than Methotrexate or 3 of the 4 others I’ve tried?

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I agree with what Freckle wrote- and very well said.

Happy43- When I read what your GP said to you it doesn't come off as a personal attack but just stating her truth, how she sees and feels about the situation. Just my opinion, but I would not file a complaint for that. It could backfire and you might end up regretting it, esp if shes a good doctor and just had a moment of frustration with the system.

Another way to look at it- you want her to be warm, patient, compassionate and understanding, you can take charge of the situation by being patient and forgiving of her. Its perhaps not fair but can be empowering to take the lead that way.

I have had auto-immune disorders for 12 years, Immune Thrombocytopenia, Sjogrens/Lupus. And I agree with what others have said about doctors knowing about testing and drugs- not great with emotional support. I don't ask my GP about rheumatology issues because she has given me bad advice- she really doesn't know enough about it! I do ask my hematologist/oncologist about Sjogrens/Lupus drugs because hes so very smart and gives me amazing good advice. He asks if rheumatology is keeping up with liver/kidney tests every 3 months- no, so he does the tests. He is great but has gotten frustrated/angry at me a few times over the years. No doctor is perfect all the time, and hey I'm not the perfect patient. I've refused suggested treatment and yes, this does frustrate doctors.

I do take some pharmaceuticals- hydroxy and Nplate injections, steroids. I've found diet, exercise/swimming, acupuncture and visualizing meditation has been helpful. I've stopped sugar, lost weight and gone to plant based diet. Acupuncture has been amazing for Sjogrens neuropathy. Its a journey- Good luck!

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Happy43 You write "My usual GP has always been patient and considerate until today .... she said she is frustrated as a GP with limited knowledge at my repeated visits to the surgery. .... I feel like I have been disciplined and now i am concerned to visit the surgery in future for fear of being branded a time waster."

The GP seems to be projecting her shortcomings onto you.

I have had this type of response and find one way of dealing with it is to turn it around 180 degrees. Instead of letting your GP talk about your repeated visits (and by implication HER wasted time), it may be useful to talk about your frustration with the need for so many repeated visits (and by implication YOUR wasted time).

Furthermore, it may be worth indicating that you expect something more productive from all your many visits and have tolerated her ineffectiveness for some time. Also that if your GP feels out of her depth then she should refer you to someone with more experience or expertise rather than take more of your time.

Just my two cents worth!

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Hi Cetus thank you for replying. Yes exactly! If only I was brave enough to say that 😜

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