Undiagnosed for years

[Swimbler]

hello , I’ve read many of your stories and whilst it is never good to hear of people suffering I’m heartened to read of symptoms that others experience very similar to me

I have genital ulcers, gastro problems, very very occasional mouth ulcer, eye problems, hear and balance problems and continual headaches. And I read somewhere someone mentioned tremors! Yes I get them in legs around heart and very occasionally had it in brain,. Doctors think I’m mad and have given me cream for vulva, Imodium for gastro problems, hearing aids!! And a load of high blood pressure tablets that don’t change my blood pressure. There are brain changes which I find quite scary, small vessel damage, but they say that’s becuase of high blood pressure, they think. I live in Scotland and my chances of getting my gp to agree to a referral to the CoE seems very remote, but I will try

Does anyone else have tremor feelings, it’s like an internal shaking and happens waking up from sleep

Thanks for reading

[Budapest]

Hi Swimbler,

Have you called the Scottish Vasculitis Helpline for advice?

Is there a local Vasculitis Support group to whom you could turn?

Every good wish,

[Swimbler in reply to Budapest]

thankyou for your suggestion re Scottish support group , possibly, yes but also there may be a shred of positivity now coming from GP

thanks

[Ayea]

Hi There Swimbler,

I have a lot of muscle tremors - it's one of the more significant symptoms I have. For example I can be resting and my leg muscles will be twitching and tremoring - that happens a lot. I also have muscle spasms. In fact, the tremoring is almost like the muscles all over my body are in a constant state of low level spasm. This is a bit tortuous, as it causes me to feel both restless and fatigued at the same time! Also makes the muscles very tired when I exercise (which I make myself do as it helps to calm this feeling down).

If you are having this feeling particularly in the morning, then try jumping into a warm shower or doing some stretching or light exercise (or ideally, all of these!). I find all of these help. I think that it gets the blood flowing around the body and calms the muscles down.

You seem to be describing something different when you say heart and brain tremors?

I have small vessel damage in my eyes which is pretty typical in Behcets, but I imagine that can happen anywhere in the body as it is a systemic disease. I also have near constant tinnitus, which gets worse with inflammation.

My GP had not heard of Behcets and has still not appreciated how wide ranging and diverse the symptoms can be... I guess that's why it is so under diagnosed in the UK.

Try speaking to someone with knowledge of vasculitis, as Budapest suggested in their reply. I was diagnosed by a Rheumy that specialised in Lupus and Vasculitis, so it's not necessary to go to a Behcets CoE if that is difficult from Scotland.

[SourdoughSpecial]

Hello Swimbler,

I am new to this site.

Your details were very informative so thank you.

Three questions:

1 What does CoE stand for?

2 Why does my rheumatology specialist not want to admit that I have Behçets yet I have so many of the symptoms?

3. I would love to have a 'Behçets Buddy' locally, anyone have any ideas on how I would do this?

Keep strong

[Swimbler in reply to SourdoughSpecial]

hi Centre of Excellence for CoE all threee in south of England

I think doctors don't want to accept/discuss because it's so rare and therefore more likely to the everyday stuff, and not a rare condition. And there is no single definitive test. I don't yet have a diagnosis but my GP did mention Behcets 2 weeks ago so after years I feel im making a little progress

thanks