Wrong diagnosis??

I'm normally quite positive..and normally feel much better than I have done for the last few weeks. I definitely don't suffer as much as some of the poor people on this site...but today I'm feeling let down (again) by my NHS GP, aching all over, exhausted...and a bit teary.

I went to see him a couple of weeks ago because I'd had some sort of 'flu for a couple of weeks, and even although I was feeling better from that, I couldn't get my head off the pillow with exhaustion, my muscles were/are aching all over etc. I assumed it was a flare after being ill. I just wanted to know whether I should go back onto the steroids that I had managed to ween off just before Christmas.

To give a little history, I was diagnosed privately with hashi's and sjorgrens/SLE overlap. The reason I went to a private doctor in the first place was because I didn't want to waste my local GP's very, very busy time just because I was tired and had a red rash on my face.

I have seen a good endo and a really helpful rheumy. However, I need to be on T3 for the hashi's and the cost is ridiculous, so I went to my local GP and asked him to help. He does and kindly provides all of the meds that were on my private prescription (T3, hydrocloroquinine, painkillers, eye drops and steroids when I was taking them). However, he seems to think that he can help and won't send me to a rheumy...it's almost as if he doesn't believe the diagnosis. The other day, he mentioned fibromyalgia and bechets disease. I asked him if he would refer me to either the rheumy I've seen in London, (or one nearby) but he said that he would call the rheumy as he had a few ideas.

He won't and I won't see him again until they call me in to review my meds. This is what happens after every appointment.

I have a few questions that I thought it more likely that people on this site would know. Fibromyalgia sounds horrible. However, it sounds more like pain that the aching muscles I have? Also, I have a positive ANA 1:1280 and positive anti-Ro. I can't find anything about antibodies when I read about it. I'd be very grateful for any input as I'm sure the treatment is different.

It's really difficult to try to work this all out yourself, so if anyone could help I would be very grateful. Symptoms include knuckle pain, only one swollen. Aching knees, hands and feet. Burning hot, or cold and blue fingers/toes, sore dry eyes, rash across my face, extreme fatigue, ulcers, palpitations, poor sleep, aching legs that feel like toothache and tingle, lump on lymph on one side of neck, photosensitivity etc. Lots of these things make me think it must be Sjorgrens/SLE...but maybe not?

Any info would be very helpful as I think I need to work this out myself and be more proactive.

Thank you very much in advance.

3 Replies

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  • Hi, can you call your Rheumy or endo to make an apt directly if the GP won't do it? I have similar symptom sometimes as I have SS and RA. Usually with SS I have muscle aches, weakness, fatigue, dry eye, dry mouth but sometimes when I have a really bad flare my immune system attacks my thyroid and causes the overproduction of hormones which gives me the palps, hot flashes, and makes me so exhausted. One time I couldn't get out of bed like you said. The thyroid is awful! Have you had recent blood work? Maybe that's whats causing most of your trouble.

    PS. I learned I have a great deal of anxiety which I never realized before and I stress myself over family situations and I find when I'm having unexplained illness, I feel even more stressed and that causes my palps sometimes and I have to calm myself to relax and make it go away. Are you having other problems you are stressed about?

  • Thank you so much for your reply. Actually, my family life is lovely..apart from my really weird mood swings. They all told me last week that I was much nicer in the morning....need to work on that! x

  • Try asking for an audience with either the senior doctor in the practice (if that isn't who you see) or with the practice manager and explain the dilemma. You are entitled to be referred.

    However, if he is muttering about Behcet's then you need the right rheumy for that - so I suggest you go to the VasculitisUK forum and ask them for some suggestions. Keyes in particular will have some sage words - she has a vasculitis with a Behcet's crossover, very rare. It took her a long time to get it nailed.

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