Referral to centre of excellence

Referral to centre of excellence

Hello all, I'm Anthony I'm 41, I joined this board a few weeks back as my symptoms all pointed towards BD. I have been really ill since 2014 after a head injury. But suffered chronic fatigue since a viral infection at 19. These episodes of no energy were shrugged off by GP after GP. Sent for heart tests, in 2009 incl treadmill test which I passed, came out the hospital and collapsed into our car and slept for 23 hours straight.

Fast forward to 2014 felt weird episode at work, next I was smashing into a door post lost consciousness for 4.5 hours. Hospitalised for a week, banging migraines and light sensitive, joint pains, dizziness, diagnosed post traumatic migraines. Pains increased, have to use crutches to walk. Outbreaks of mouth ulcers, scalp sores,

Then diagnosed wuth chronic fatigue and fibromyalgia. I read that people have contacted the CoE and they say to ask GP to refer, I finally did this. The GP I saw was about to ask me if I'd ever heard of bechets when I asked her. Luckily she had come across it in her medical training and totally agreed it was very likely as my mouth and head was worse than what she had seen in bechets.

So I'm ill in bed, 24 hours after GP appointed to ive got 10 more sores on head and mouth is becoming bit less sore after mouthwash with soluble steroids. I had a course of steroids last year and after7/10 says I felt pre-19 again, didn't last though.

The most embarrassing thing is 3 times HIV has been questioned, I tend not to be the type to cry discrimination but can't help wondering as I am gay and in a loving committed relationship for 12 years. No need to even suspect that I told them, but I took the test to prove I was right. I know that ulcers are prevalent in late stage HIV but surely these medical professionals should be educated in bechets?

The more I think, I suffered 4/6 outbreaks of multiple ulcers in mouth and sore head since I was young. I have 4/5 major bechets symptoms yet I had to dig about to get myself referred. Thanks to a couple posts I read on this forum.

Thank you to those who mentioned the CoE as I would just be accepting chronic fatigue and fibromyalgia as my diagnosis when I know it's much more.

Anthony 💜

7 Replies

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  • Glad you have got the referral and hope that the C of E can help.

    I don't think you are alone in HIV being considered. I was certainly tested for it ( female, heterosexual, married ) and also syphilis ( without my consent! ).

    It's heartening that your GP had heard of Behcets. The problem is that there are over 7000 rare diseases and GP's are generalists.

  • yes.. i think HIV and Syphilis are standard for us .. also single (not sexually active) middle aged woman .. tested twice... once by Immunologist and once by Neurologist..

  • I've always told people I "basically have aids- without the virus." I have been tested for every std and AiDS multiple times as I have prevalent thrush, ulcers etc. All negative. One thing that was told to me as well that sort of kept

    things in perspective was that: yes you have an autoimmune disease, but you are also

    human and so regular

    illness and disease can happen too with out being related to an autoimmune disease.

    Rest up and feel

    well-

  • Am interested in your scalp sores.. I get scalp sores but was unsure if connected...

  • If I'm correct in behcets it's something to do with the skin folicules? GP prescribed me clarithromycin as the sores are infected. After 2 tablets the sores feel better.

  • Don't worry about them asking about hiv. They have too to everybody to protect themselves and behcets does have a lot of features of hiv. Please let that roll off your back good luck

  • Finally had a txt message confirming my referral and a letter will be sent soon. In meantime I've had another flare back to back, as the steroids worked to reduce the throat ulcers , my tongue was still sore. The GP gave me more of a spray to ease soreness but no more steroids (soluble to gargle with).

    Wasn't 3 days and the ulcers were worse than the first major outbreak , now I have more steroids and the order is to use as a mouthwash but swallow afterwards. Must say, in 2 days I am feeling so much better. The GP stated to keep the remaining steroids in reserve, she also put a note on file so I can call up and request steroids to be issued same day.

    She was horrified at the number of ulcers, and hoped the CoE would see me during such a flare.

    Strange thing is, during the ulcer flares the joint pains I suffer lessen, as the ulcers subside the pains are horrendous. This probably is a case of fibromyalgia and bechets after all. I was hoping that it was all behcets and that diagnosis was wrong. But I will let the experts decide.

    Thank you to all who have responded, as I said in my OP I am not one to cry discrimination, just wondered if anyone else had been asked to have a HIV test.

    The rheumatologist ordered Hep ABC tests too, even though most cover acute versions of my symptoms - but wary as he also told me to exercise even if it hurt and just push through the pain! The neuro and my GP condemned that advice and said you have CFS and fibromyalgia , doing that will make you worse.

    Needless to say we can accept advice but at the end of the day we do need to research and broach the subject with other professionals before we implement that advice.

    Had my fair share of "tough it out" remarks and it's "medication overuse headache" diagnosis's.

    One thing is for sure as each flare occurs I can feel the difference in my energy levels , appetite, bowel activities etc- coinciding with previous flares. Strange how the first few times you don't notice but then it clicks into place.

    Thanks again all, really appreciate your replies - we are a friendly lot even though we are not well!

    Anthony 🤒🤕

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