Can of worms!

[shell2138]

Right I've had my blood results and they have come back negative and all is well. No lupus! I asked the doctor for a raynards test, he said he would get back to me. 2 days latter he rings me telling me he LOOKED on a website and there is no test for it! That was the end of the conversation. I've lost all faith in my doctor, why would he need to look on a website? Why does he not know? Should I get a new doctor? Do I open this can of worms and carry on digging or do I stop here and carry on as I have been? Please any advice would be appreciated x x

[Hidden]

Hi shell2138, have been trying to find any symptoms you may have. As you are new, there is obviously not a lot of history to read. I know previously you posted that 2 members of your family have lupus, to which I replied. I'm sure you are aware of the classic symptoms because of your family, but were they dx by bloods alone. A lupus rheumatologist would take many things into consideration, not just bloods. I would ask your GP for a referral just to make sure.

With regards to your GP, I wouldn't be too quick to judge. They don't know about every ill ness, and lots do google nowadays. At least they didn't forget you, when you left the surgery, and they took the time to call you. Your GP should have looked further into diagnosing lupus, on the web.......don't think that I always have sympathy for the Drs, believe me, I have had a lot of bad ones including consultants. Only you know, whether or not to change.

In the meantime, keep a symptom diary of all your ailments, even if you are not sure if they could be lupus related. Also take photos of any rashes, raynauds features, to show. Most important thing of all, if you feel you have an illness, keep on for a referral.

[shell2138 in reply to Hidden]

Hi 6161 I've replied with my symptoms at the bottom of this conversation hope this helps x

[Hidden in reply to shell2138]

Hi shell2138, yes it does help, and I'm sure, as I said earlier, you are already familiar with these types of problems, with your family. My advice remains the same, so don't get defeated, ask for rheumy referral or change gps, if you don't feel supported. You clearly have health issues, that need to be addressed. Good luck, keep us informed, and by the way, "growing old disgracefully", will be my attitude too. Hahaha

[shell2138 in reply to Hidden]

I would like to think I'm strong enough to get through anything, just occasionally need a little nudge and a tonne of guidance lol I'll keep everyone informed every step of the way, thank you so much for your advice, and if you ever fancy being disgracefull together let me know lmao x x

[Hidden]

There is no actual blood test for Raynaud's. Raynaud's can occur by itself (primary) with no actual underlying cause. You would know you had it by your symptoms alone. Your dr would need to test for any underlying causes such as Scleroderma, lupus or RA. In most cases Raynaud's is 'benign' (inconvenient as it is).

[misty14]

Hi shell2138

Raynauds is diagnosed by a test that is called the nail fold capilory test. They look at your nails under a microscope and take readings. Have a look at the Raynauds and Scleroderma Website. I'm sorry your having such a battle for a diagnosis but sadly your story is a familiar one for us all and you have to keep fighting!. Good luckX

[Hidden]

Hi shell2138 - as Misty14 has said there is a nail fold capillary test some specialists can do for Raynauds. If you have primary Raynauds your capillaries will be normal but if they are enlarged then there is a likelihood that you have secondary Raynauds. Having said this I was diagnosed with secondary Raynauds but no one has offered me this test so it isn't done routinely in many places.

The reason it is done as a priority for some people is to exclude Scleroderma, which is a serious disease that needs identifying and treating as soon as possible. I know this because I went to a talk on Raynauds at a rheumatology congress. I never learnt what the prognosis is for Raynauds secondary to RA or Lupus I'm afraid although I did ask. They did say that if the ESR (sedimentary rate) is normal then this would exclude the Raynauds as secondary/ autoimmune.

Re negative markers - I have negative markers for ANA and have been told Lupus is very unlikely for me although I do have RA and secondary Sjogrens and I do have a high ESR usually as well as other markers indicating high inflammation. I also have a lot of as yet unidentified skin problems so I feel more comfortable with this community presently. I have asked here and people have said I'm okay to remain. I don't know what your symptoms are but a connective tissue specialist told me that it is possible to have Lupus without positive blood markers - just a lot less likely.

[Larrylad123]

Hi Shelley2 138

Don't give up what r your symptoms?

[tashi]

I was diagnosed with Raynauds 30 years ago by GP. No tests were required as the symptoms in primary cases were pretty obvious - cold, white fingers &/or toes, turn red/itchy as warm up, tendency to get chilblains etc - those and others all well documented as Misty14 says check out raynauds.org.uk. I was then diagnosed with DLE & SLE lupus 5 years ago and then Raynauds became a secondary condition under the lupus umbrella (along with Sjorgrens, hypothyroid..). I still have to take nifedipine for it. Raynauds is in itself annoying but you learn to live with it!

Also it can take ages to get a lupus diagnosis as people on here have said, very frustrating, these conditions can often be associated with other ailments, the blood tests are just part of the diagnostic path - they are not the absolute answer - and used to monitor changes too which in turn help with prescribing meds.

Just feel that gps and rheumys get a lot of stick on here, I had trouble with rheumy until I told him how I felt about his treatment, side effects, time it all took ;). Now he listens and I update by phone rheumy nurses/ his secretary between consults. He explains options in more detail too when I really don't understand. I have also been very lucky with my GP who is lovely, if it wasn't for her I wouldn't have been referred to dermatology so swiftly after basic blood tests, for them to do their stuff and diagnose DLE with scalp biopsy - they also monitored bloods and phoned me one evening to say something was looking bad, they consulted rheumy started drugs and then I was put on the rheumy list too.

So today is hospital eye unit, Thursday is hospital dental as my dentist scared I'll bleed to death in her chair lol, then couple of weeks time it's rheumy then dermatologist. Much as I might complain, I'm grateful to be on the radar and treatment is trial and error - Aza didn't work, trying Methotrexate now. I hate having lupus, and 5 years on still angry it's changed my life, but that's not the gp/consultants fault either. Apparently there's only 1 other lupus patient in my gp practice, they can't be experts on everything - but they do look things up and do get back to me, that works

If you're not happy, don't get cross - ask for second opinion - everyone is entitled to one. Ask for advice from lupus org or relevant organisation to your condition. As lupus sufferers we can only get things advanced if we keep on the case reporting stuff that is or isn't working.

Rant over - hospital tell you to allow 3 hours at eye unit, bored already. Happy days x

[EOLHPC in reply to tashi]

I agree: couldn't have even begun to put this into words as well as you have tashi....so, thanks! You've helped me to believe in my own conclusions

Well, here's a bit of testimonial:

Our previous older gp (who got my diagnoses famously wrong for years....to the point he spent a decade considering a malignant chondrosarcoma to be 'just' arthritis...this was before computers became widespread). His replacement almost always tells us to google our conditions. He also has mis-diagnosed me loads...well, to be fair, he has treated symptoms without looking for underlying causes. Then I moved sideways to a part time lady gp because I had sinister persistent gyn symptoms....she enthusiastically got onto this gyn thing, as well as onto my long term persistent problems, one by one....until finally what has turned out to be my infant onset lupus was re diagnosed 3 years ago at 58.....but mainly because, again, I sidestepped a reluctant rheumatologist and hunted out the most lupus experienced rheumatologist in our region and stubbornly requested my surgery's referral

and during the past 3 years of treatment for what I now know is, in my case, a lifelong unacknowledged multi system autoimmune condition, I have tried harder than ever before to figure this health game out....by researching my medical issues as much as poss + studying how the nhs works as much as poss in order to help me feel more confident about engaging in my ongoing diagnosis & treatment stuff....and as these past 3 years have passed, I've noticed healthcare professionals becoming more willing and respectful towards me....it is what it is....

[tashi in reply to EOLHPC]

Thank you Barnclown. Very slow diagnosis of your infant onset lupus indeed but things have moved on - well, slowly but they have lol. My mother died 30 years ago aged 53 - my exact age now, although there is no proof, my rheumy said it was possible she also had lupus (I remember her Raynauds very clearly amongst other things). So hopefully as I'm on the radar that sadly didn't exist in her day, my prospects - and I hope all you other lupus sufferers will be better & continue to improve or stabilise - we know it won't go away (least not in our lifetime I suspect).

Barnclown you're absolutely right to investigate, question and aim to understand - glad that it's getting you results that are helpful And I hope others will use your example too, and feel confident enough to see another GP, ask for a referral or advice. Thank you for your response, I feel re-assured too now xx

[EOLHPC in reply to tashi]

Yes: always aim to understand....which I'm finally beginning to do more of most recently:

It wasn't until 3 years ago when my condition had advanced enough to mean the nhs HAD to look at my autoimmune status, that I was tested for lupus...which I'd never heard of. when I told my aged mother about the blood tests, she said "but, dear, you've always had lupus!" and explained that I'd been diagnosed as an infant & teen several times, but she never understood the significance of these diagnoses and kept them to herself....and just thought I got better each time...and that, between flares, all my typical symptoms were just "normal" illness. So, at 21, I moved to the uk ignorant of my full medical history. There followed decades of dodgy health & multiple partial diagnoses.

But I did know I was a DES daughter, with typical reproductive organ birth defects, who had been advised to have annual internal exams etc. Even so, the nhs blanked my requests....until my lupus was recognised....then, 3 years ago, suddenly I was being called in for annual monitoring. Since then consultants have offered unprovoked that my DES exposure is probably most accountable for my version of lupus. I say "my version" because I suspect not enough is known, yet, about cases like mine....which has been conscientiously lifestyle managed, but has progressed virtually unimpeded by prescription systemic treatment except in emergencies, and now, finally, as of 3 years ago, is responding reasonably well to full-on prescription of meds like hydroxy, pred, myco etc. so here I am at 60 feeling better than I have since the 1970s....

It IS good you think carefully about your mother's health story, and discuss it with your doctors. I'm just bold enough to feel a mother would be v proud to see you doing this.

Thank you. I do agree: hope our stories can be useful to others

XO

[Whathappned]

Hi Shell2138

Doctors are forever looking up things. A medical book is out of date after 10 years. They cannot possibly know the in's and out's of everything. They are mere human beings with limited memory, like you or me. Doctors ARE very knowledgeable but a good doctor is not afraid to say they do not know. And this is good, as long as they then try to find answers or refer you to a specialist. You don't expect an electrition to know how to plumb your house, do the brickwork or renew the roof so why do we expect our doctors be jack of all trades

[Cann]

I had the same sort of experience and I went the complementary route 14 years ago. Some doctors know so little and only what they learnt in training and from pharmaceutical reps. while others do their own research. I would suggest finding another doctor, but could be like looking for a needle in a haystack. My GP is knowledgeable and knows how sensitive I am. He is careful what he prescribes because he knows that one drug can set off worse symptoms for me even if it helps the first problem and anti-inflammatory drugs have horrendous side-effects for me, so I do my best to manage it all naturally.

[Whathappned in reply to Cann]

I'm sorry but all doctors are regularly appraised and have to keep up to date with their knowledge constantly. As I said they just cant learn it all and often need to read up on to the subject. Not one GP will only know what they learnt in training as medicine is an ongoing learning vocation. Unlike working in an office, shop or factory, they are continually taking courses, often degree level or above. You call a GP trainee a Regestrar not because they are new to being a doctor but that they have completed their training, worked as a doctor in hospital, in a speciality, and then chose to become a GP. I think you are being unrealistic and naive to think that you will get a doctor who knows all aspects of Medicine. It would be nice to think more progress is made in the area of Lupus. But at the end of the day it is the government that identifies which areas of practice is priority. Dementia, Alcohol and Obesity are their most recent. If we prove that the Connective tissue diseases cost the country money in loss of income, treatment , sickness and dissibility payments then time and effort would be put in to primary and secondary prevention and treatment of Lupus. That's how health in this country works. And its not the GP's who decide.

[Cann]

What you say may be true, but we do have to be careful because I was diagnosed with hypothyroidism in 2009 and prescribed levothyroxine and told by a GP I would need to take it for the rest of my life. Luckily, I read the leaflet and found it contained Lactose to which I am allergic as was recorded in my records. I found another GP who understands about allergies. I have had several such experiences one which nearly cost me my life, so forgive me if I seem to feel that some GP's are better than others, but that is my own experience and no one can tell me different!

[Whathappned in reply to Cann]

I see where your coming from now and understand. That was a definite error on the GP's part but it does happen and it something that we do try to prevent but can't always.I suppose unless you have tried the job or similar you will never get where we are coming from on that one. But that some of the reasons why they get paid their money, the knowledge they are supposed to have and the risks of the job, which is making a mistake!

I spend most of my life worried. I get the jobs they no longer want to do - such as Baby immuisations. The Well baby clinic has had me feeling ill every week for the past 11 years.

It was the fact that you stated they do not do further learning, whilst in fact, even the most useless GP will have to constantly study and prove it. Just like I am regulated as a qualified nurse and have to constantly keep my knowledge up to date.

[Cann]

Are they actually assessed on the courses or do they just do the courses and get signed off?

[Whathappned in reply to Cann]

I think they do a variety of types of assessment lolx

[shell2138]

Hi whathappned at no point in my question did I state that they do no further learning! Yes in some aspects of my life I am naive, but I feel as though you have jumped on me when I was just asking some questions that are relavent to me. Please reread my questions, I respect both doctors and nurses and know I could never do the job you guys do. I am greatfull for all advice but would appreciate it more if it wasn't so forcefully put!!

[Whathappned in reply to shell2138]

The reply was under Cann's reply to me in response to what she wrote and not to your post. I did however reply to you further up regarding the fact you seemed shocked that a GP would need to look something up.

[shell2138]

I am very sorry, it seams it was me that jumped on you, sorry x

[Whathappned in reply to shell2138]

No worries.

Its probably best to keep me in check. I re read what I write sometimes and think oops need to change that x

[shell2138]

As many of you have asked about mt syptoms i thought i should share and fingers crossed this may help with future advice from all you kind people.

My symptoms are, I'm always tired and I mean really tired, I have eczmea and skin rashes that the doctors been treating for about 6 years with betnovate, tenosynovitis in both my arms, writs, thumbs it comes and goes its never there all the time, I've been under physio for over 2 years, I get swelling in most of my joints and right now I can hardley walk on my left foot, even though I've never hurt or damaged it. I bruise at the drop of a hat, I have nose bleeds like there going out of fashion, I have gray clouds over both my ovaries that was found on an ultrasound but it was never followed up, I was to scared to find out the answers. That was 6 years ago. I pee like a race horse at least twice or even 3 times in an hour, I keep getting abcesses and when I'm porley it feels like the world is ending, every time I wash my hair I'm pulling out hand fulls but my hair never thins, I believe I have raynauds as my toes and fingers get so cold they turn white and hurt even in summer. I have really bad circulation nothing I do will stop or even ease it, and I burn within minutes of being in the sun, I have light sensitivity to the point were I have to close my eyes even with sun glasses on. I think that's all of it.

All of that and including 2 of my family members being diagnosed, also my mother and sister showing signs, my sister has endometriosis, my mother is nearly bald and has diabetes.

Hope this is all relevant x

[Whathappned in reply to shell2138]

Hi shell2138,

Obviously we can't tell you what you have but what so many of us do know is you persist. You know that these things are not right. It has taken some of us years to get a diagnosis and some of us still don't have a definitive diagnosis. I'm not sure about how effective your GP is but remember they are only human and you have a right to try to find a cause to why you feel as you do.

Good luck and don't give up x

[Cann in reply to shell2138]

You poor thing, you sound very similar to me. My eczema was not helped by betnovate which I had to stop using as you are only suppose to use for a short time. I get pains all about my body - fingers, wrist, thumbs, back headaches, etc., but not diagnosed as anything because I find my body reacts to any invasive tests. I bruise so easily, too and get nose-bleeds. Sometimes I pass urine very often others I can't go. My symptoms change with the weather, literally. I had endometriosis and lost 4 babies - a hysterectomy never solved the problem and I didn't want it nor expect it to either. I get abscesses, too and constant sores on my lips and up my nose, on my gums and I, too, bleed a lot at the dentist. When I feel bad it is like a morbid feeling and I know what you mean about the end of the world - I told my doctor this because I was diagnosed with depression at one time and I said it is not depression. My hair falls out and I wear a wig. It can grow back, but rather than worry about the intermittent falling and out and coming back, I just wear it and keep it all short. My fingers and toes turn white, blue and purple and can be very sore at that time. I have loads more symptoms, too, and I dread old age and how I'll manage.

[shell2138 in reply to Cann]

Sounds like were from the same mold, I plan to grow old with out grace and a lot of fun, regardless of pain. I hope it will get better and if it doesn't I'll deal with that when it gets here x I hope you can do the same and if not always try, give it your all x

[Cann in reply to shell2138]

Yes, there are a lot of us about! On good days I take a very positive attitude, but when I feel bad and restricted, I worry.

I do my best to keep positive and concentrate on things I can do.

I play table tennis, do the garden, although had to stop for a few days as my back was so painful.

I am a voluntary member of the table tennis club committee and I fight for what I think are good causes whenever I can, as well as run my home and look after my husband who has diabetes and other probs.

I have been stressed by watching builders working on an extension at the back of my home where seagulls are nesting.

I love watching at nesting time, but not this year - watching the builders taunting and tormenting even the young has dented my faith in human nature.

I contacted the RSPB and they said to phone 101.

I have phoned the police on 101 when one of the builders was trying to drive the two babies(there were 3, but something happened to 1) off the edge with a measuring stick.

I got nowhere.

I then phoned again when they removed their nest.

I believe they contacted the company owner, but I know no more and cannot seem to find out.

I am still watching as much as I can to see they don't hurt the babies, but they have been lost without their nest and it has been so hot for their little feet on the roof with no nest.

I do give it my all and I think sometimes that is part of the problem and I just have to sleep!

I just have to trust that old age will be OK or perhaps I will make the transition to the other side before I suffer too much!

[shell2138]

Thank you I will give as good as I get x

[Jonnyhod]

Take it this is your GP?

If you think there is more to your symptoms, ask to be referred to hospital

[shell2138 in reply to Jonnyhod]

I'm popping back to see gp next week for a chat if I think it more beneficial I will defiantly do so, thank you

[Cann in reply to shell2138]

I write to my GP regularly and inform him of all my symptoms. He appreciates that and records it in my records. I see a doctor at Bristol who monitors me. I do the former as a safety precaution in case I need emergency treatment because, as I stated to Whathappned I was given the wrong treatment once that nearly killed me and then I ended up with the auto- immune system problem that resembles lupus in so many ways, but I don't want to spend my life going to and fro hospital and having tests - I want to enjoy the time I've got left and do the things I want to. Also, I pick up infection so easily and doctors surgeries and hospitals are the worst places for me regarding this apart from public loos and supermarkets!