Neuro Bechets - Advice Please

[moonflower3]

Hi

I may have posted this in the wrong place if so I’m sorry.

I have recently had two severe Neuro Bechets flares.At the beginning of December and also on Christmas Day onwards.I was unable to move or speak and debilitating headache and dizziness which lasted nearly 3 day and I’m still slowly recovering .

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

[moonflower3]

Also Codiene /Paracetamol and difflam none of these touch the pain.

My flares are usually Mouth/Genital Ulcers- inflamed swollen joints . Brain Fog. Chronic Fatigue etc.

Please let me know what you think and how often you have Neuro Bechets flares or are they ongoing.

I’m terrified that I won’t recover properly.

[TomTomC in reply to moonflower3]

I would say my symptoms come on if I do much a lot or concentrate for too long or don’t sleep, get stressed, similar to the normal triggers for the rest of it. So it’s difficult to say, as big ones not too often but I guess small ones requiring rest more often I can tell it’s coming a bit more now. I get a funny smell too, did you get that?

[TomTomC]

Dr Kidd is the neurologist there, he will fix you up don’t worry. He is there on Thursdays or Fridays I think, call and ask, so you can see him. In the meantime may be see your GP for steroids. Prednisone.

[Dustydander]

I take Colchicine 1 daily with alternate days 2 daily. This seems to hold off the mouth sores. I get some GI issues but the mouth ulcers are much worse. I'm not sure why I don't have more GI issues as I had IBS like symptoms prior to the Colchicine.

I also need to be careful with stress and over doing or I get a flare as well. Not sure why but after my Flu shot I had a flare for about 2 weeks. Better now.