Failure of Drs and specialists in recognising and treating lupus and other health conditions.

I just had to write this post today. After getting a double appointment with a new lady dr yesterday I thought we could look at my long list of symptoms and as I am just so unwell. I was most concerned with my problems with swallowing and my neck and throat all swollen and was a little taken aback when she would only concentrate on one symptom my migraines and she seemed to think that anti depressants tablets were the cure for everything. She said and my memory clinic dr said the same thing it’s depression which is causes my migraines along with 2 scans telling me I have bleeds on the brain. I wanted a referral to a neurologist but got nowhere. The sense of frustration is immense especially as I get about 5/10 minutes to rush through my symptoms with the rheumatologist and migrain nurse as they just want you in and out. I am at a loss what to do am forever searching for cures and alternatives for my many ailments. It seems that most health care professionals are just not concerned and it’s so easy to be fobbed off by them. My friends and family are concerned about how unwell I am especially as I am now showing all the signs of Sjögrens and scleroderma on top of signs of lupus which I am being tested for. I now have absolutely zero confidence in any dept or dr as everyone is more concerned with cutting costs and getting everyone off the waiting lists. It’s now back to saving all my money for private care. It’s my last chance to get somewhere. I wish everyone on this site that they get somewhere with all there medical concerns. Thank you for listening and if anyone has any ideas or advice on how to get the best care I would greatly appreciate it. Thanks and have a great day. 😀

[Boudica1]

I'm afraid a lot of us go through the same thing and are left feeling that we are hypochondriac and or some kind of nut case especially if the blood tests are borderline or negative. At times it does seem as if they are obsessed with the blood tests and if they are negative you are wasting their time no matter how many symptoms you have or rashes for that matter.

They something is going on with my body and have had bloods for all sorts but everything keeps coming back negative so I'm nowhere nearer and have to wait and see.

Frustrating at best but to be honest as long as some of the symptoms are treated then that's something.

Would be nice to know why I get so many different types of rashes and why so many other things are going on and if there is a connection. Mine all started within months so to me they must be linked somehow.

Hope you find answers soon as I know it can take years to get a diagnosis.

Take care. X

[Hidden in reply to Boudica1]

Thank you for your reply. If your blood tests are not picking anything wrong at this moment in time that doesn’t mean there’s no reason for your I’ll heakth. My bloods were always normal then suddenly they slightly altered. I have read that something like 2 per cent will not show anything in the blood even if they are unwell. I would definitely keep a diary along with pictures and in time they will get to figure out what’s wrong and you eventually get the diagnosis it’s just so frustrating it takes so long. Have a great day. Elena 😀

[Boudica1 in reply to Hidden]

I have do keep a diary of symptoms along with photos. Even the skin clinic has taken some photos of one of the rashes which is Jessners lymphocytic Infiltration although as yet they haven't taken any of the other rashes from photosensitive, Urticarial Vasculitis and petechial rash.

Rheumatology keep testing me for all sorts mainly GPA, Lupus and SS. At least the Hydroxy chloroquine seems to be helping with some of it and it will be interesting to see what happens now that I'm going on a reduced dose. At the high dose the skin and also some of the pain in my feet eased.

The blood tests are baffling them as the CRP and Neutrophils are very high and so are a number of the red cells. Plus despite eating a healthy diet vit D, B12 and Folate have plummeted.

Maybe one day they will be able to nail it down to whatever until then I'm stuck on a crazy merry-go-round and can't get off.

[Hidden in reply to Boudica1]

Am so sorry your so unwell and thanks for the advice. Will just have to keep plodding on in the hopes that they will soon stumble upon the answers. Cheers. 😀

[Peppytea]

Hello lovely Jeromicus888

I completely feel you on the whole not trusting any department. I was diagnosed with Fibromyalgia, after two and a half years of symptoms, finally. It probably isn’t much to some people on here who have taken upwards of 10 years for a diagnoses of lupus (which I’m currently working through) but it feels like an awfully agonising time whilst going through it. I was told doc after doc that there was absolutely nothing wrong with me, that I was far too young at 25 to be having problems with my thyroid (although my tests since I was 16 showed I was just under the borderline for hypothyroidism) and too young for anything like fibro. It wasn’t until I saw the pain consultant that diagnosed me within minutes because I turned up in a wheelchair at 8:30am and could barely walk and they could barely check my pain points because my pain was so high. I thought brilliant, someone who believe me. That was three years ago, I’ve been back to the clinic once where the nurse just complained that there wasn’t enough money for that particular department and they were absolutely swamped by patients (trying to make me feel guilty? It worked!) and I have never seen that consultant again!

Now I’m working through this diagnoses. My husband and I figured out a long time ago that we had to take my health into our hands and do as much talking to people, research and reading as possible. I have finally found my star GP, thank goodness, who does believe in everything I say. I initially had her for something so simple, then saw her again and again and she said that I seem to have a flurry of things and that’s how we got talking. I wrote a three month pain diary for her and she thinks I either have lupus and/or rheumatoid arthritis. When I went to my clinic, my consultant was an absolute idiot and interrupted everything I said, so much to the point that a lot of the time he got what he thought I was going to say wrong and I had to correct him, embarrassingly. He thinks I’m ‘normal’ and the only advice he gave me was to go to a dermatologist for my butterfly rash and not to go out in the sunshine because of the rash I get from the sun... I also have a Vit D deficiency so, great advice there 🙄

It’s now completely impossible to see my star GP as our clinic only works on emergency appointments and they don’t ever think I’m an emergency. I have to call up and tell the receptionist what’s wrong with me, then they call me back, sometimes 10 mins before they close (after the doctor has decided whether I’m worthy of their time or not) and then I get told to call back another day. And I can’t make an appointment in advance. So now I feel completely and utterly alone. I’ve asked reception to leave a note in star GP pigeon hole twice but I’ve heard nothing. I sometimes think it’s me and no one wants to have to deal with all of what I’m coping with. But guess what? Nor do I!

Sorry to rant, but moreover I just wanted you to see you are not alone in how you feel. I do feel alone sometimes because I feel bad that I’m complaining about such a wonderful service such as the NHS, just in some cases it feels as if I’m slipping through the nets whilst there are people around me getting sick notes left, right and centre for nothing. You are completely understood and I really hope it doesn’t take you too long to save up money to get private care. I’m a full time carer for my Mum and we have to move anyway as we have a large, narrow house and she needs a bungalow (and as things are going, so do I!) and she has offered to give me some money to go private which I am eternally grateful for. But obviously selling a house isn’t done at the drop of a hat.

Anyway, I truly hope this has helped you feel like you have comrades. When I read your post I just couldn’t believe that they ignored your scan and say it’s depression. I knew I had to reply. I know my story isn’t has bad as yours but I really do empathise with you, you poor thing.

Please feel free to privately message me if you need or want a chin wag.

Please let us know how you get on dear, take care 💖🌟

[Hidden in reply to Peppytea]

Hi peppytea I can’t believe what your going through it’s awful and I too have the same carry on with my gps. That bloody system they have in place is awful. I rang them last month as I was very ill only to be told they are only dealing with emergencies only. I thought that was what the hospitals are for. I can’t get an appointment and when I do I am either ignored, not believed or they see me as wasting their time. Never mind at least I know there is this site and the lovely people on it. Enjoy your day and I hope you feel much better soon. 😀

[BARTLETT1965]

Think it’s about time u either change Practices or u could start with seeing the practice manager or the GP who’s in charge of practice and making ur feeling know.

This is a regular think now a days.

None of the GPs want too hand out life sentences, which Lupus is one off as no cure.

I was checked in early 90’s with ANA test and was 0.2 out. Even thou I had all signs and symptoms for lopus decided I’ve got fibromyalgia.

[Hidden in reply to BARTLETT1965]

Thank you yes it’s definitely a step forward I am just waiting to move house this year and will be registering with new Drs. Where we live there’s not much choice but your right I should just move to another practice as I am getting nowhere. The practice manager is a horrible woman as I tried once before to get my complaint across. I am asthmatic and I got a text about seeing the asthma nurse for a review so I called in and asked may I have an appointment please. The receptionist said sorry there’s no appointments available ok I said I don’t have any more inhalers left but thanks for letting me know and I walked off. Am going to see a private dr that will cost me about £100 but I will get 30 minutes to go through all my medical history and current symptoms. I just feel like seeing a solicitor for medical negligence and getting in touch with the BBC but I don’t want the attention but i may just say I am going to get in touch with the media about my treatment. This may just highlight the sheer unwillingness on the gps to help. Having said that there is one lady lovely dr but you can never seem to get her. It’s such a carry on and am desperately searching for a better practice. Have spoken to family and friends and they now recommend seeing a dr privately. I have already paid privately to see 2 consultants for both myself and my son I can see paying is the best way forward. Am now in the middle of selling my belongings as I feel my health is the priority over possessions. Am just

So sorry you have fibromyalgia it’s what I have and it’s such a shame they didn’t test you more for the lupus too. Basically as long as you have one diagnosis Drs feel they have done their job but you have may have both. I hope you too get good care as both conditions need careful monitoring. I feel it’s all about time and money and as a result there is very little they can offer us as they are trying to keep down costs and they just want shorter waiting lists. As a result patients are not getting the care they need nor the the treatment and once your diagnosed with one condition it seems they are happy to stand back and blame each and every symptom on that condition regardless of wether it’s true or not. I hope you have a lovely week and thank you for replying with the advice. 😀

[Cas70]

I just despair ! Why can we not have Clinics with properly educated Docs and Nurses? When you move and register with a newPractice tell them you have a CHRONIC ILLNESS and want a referral to a Consultant who deals with Auto immune disease. Just keep insisting, it is in the Patients Charter. Good luck

[Hidden in reply to Cas70]

Thank you so much 😊 didn’t know about the patients charter. My drs are useless can’t wait till I register at a new one. There is a temporary one I could try so I must try that one. It’s just so distressing as I am

Going round in circles. I must learn to switch off but I thought the sooner I know what’s wrong the sooner I have all the facts and can try to get better. Thanks again. Have a great evening. 😀

[Cas70]

Its worth having a look at the Charter main points. What part of the country are you in? I am in Surrey and we either have to go to Brighton or St Thomas’s in London ! Honestly the other people I have seen just seem to be clueless! You could look up the Consultants who deal with Autoimmune and find which Hospital they work out of. You are entitled to request a referral no matter if they are in another area. I did it and my friend too. Good luck

[Hidden in reply to Cas70]

Hi thanks for the advice as I am at my wits end. I am living in the wakefield West Yorkshire area and I can’t believe I am just left in this state. The medication is useless I feel more unwell and drs or therapists don’t seem to care. I desperately need answers but I will just have to request to go to the st thomas hospital as I have heard great things about them. Will have a look online. It gets so hard as I can’t cope with the symptoms it’s relentless 24/7. Thanks for the advice I am just going to insist that they sort this out. All my Drs do is just write down my symptoms then fob me off. It’s a national disgrace. Have a great week.

[Cas70]

It is a National disgrace ! My new Consultant just sends me for more blood tests and is as vague as all the others! Good luck keep us pisted

[Hidden in reply to Cas70]

It’s shocking as I think these Drs and consultations know they can do more but refuse to. I think it’s all about money and making people go private. I hope you and I get much better soon. 😀