Neuro Bechets

[moonflower3]

I have recently suffered a Neuro Bechets flare which resulted in loss of speech and unable to walk as I was shaking uncontrollably .

Blinding headache and dizziness diarrhoea for over 7 hours.

I was completely debilitated for several days and now 10 days later I’m terrified that it will happen again

I’m afraid of being on my own and walking & driving are out of the question..

I have always been a confident and outgoing person . Now my confidence and personality have been shattered.

I still have the headache although not to the same degree and my words won’t come out correctly.

Any advice will be appreciated as I’m fearful and scared.

[TomTomC]

Hi this is what happens to me, I can’t speak remember words to speak, remember anything, my short term memory disappears completely, the headaches come on when I move at all, I then am unable to move my head. Mine also stopped me being able to feel when I need to go etc. I also need to wee, but loose the ability to do it properly, just a dribble comes out. Have you got a neurologist? Don’t worry they can help. Pvt if you need more information. Tom xx

[moonflower3 in reply to TomTomC]

Hi Tom

I was prescribed Azathioprine which made me very ill to I was told to stop taking it.

Then a year or so later I was prescribed Methrazate? Not sure of the spelling. Which also made me ill and I was told to stop taking it also.

I attend Behcets Centre of Excellence in London.

I’ve contacted them to see if I could get an urgent appointment as I have have had these two episodes that a I think to be Neuro Bechets.

I really hate medication and chemicals going into my body as I think it has a lot to deal with anyway.

No doubt I will have to accept the treatment.

I know that most of you are on strong medication with severe side effects.

I am not taking anything at all at the moment.

Well, 3 in 1 mouthwash . Colchicine occasionally as I can’t tolerate it and then spend most of the day in the bathroom.

I would appreciate all your views and advice. Please be gentle with me as I’m very scared at the moment.

I already have an appointment in February . Thank you . Moonflower

[sam0511]

This must be so frightening - the details of not being able to speak etc sounds familiar to strange episodes I experience from time to time. I can't explain how it feels really, but I can't speak and get an awful metallic taste in my mouth. It only last about 30 seconds - I also feel like something is creeping up behind me. I have tried to explain to GP and medics and the only explanation is some sort of panic attack, but I'm not convinced. I completely understand regarding confidence. Please post how you are getting on. x

[GlastoGal in reply to sam0511]

Have had same experience as you and also told it was a panic attack!

They mainly occurred with me while sleeping! I would be awoke with a pounding heart, metallic taste in mouth, weakness in limbs and feeling like blood is running cold around my body. The symptoms are those mentioned in a panic attack however I found it very strange they occurred whilst asleep! I would be unable to speak and feel like I was going a bit mad!

I had been commenced on Seroxat so that was stopped. Eventually they stopped, however, I started Mycophenolate (Cellcept) last May and they occurred a few times soon after only during the day and especially when active - walking (not even a fast pace).

I told the doctor but they didn’t even really comment on what it could be. A blood pressure check (not during episode) was normal.

[TomTomC]

Also meant to say, they put my prednisone up to 30mgs a day when I’m like that.