Newly Diagnosed with Neuro-Behcets: anyone have... - Behçet's UK

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Newly Diagnosed with Neuro-Behcets

anyone have any advice? What this really entails? Does it just mean to expect the same flare ups but on my brain? Or can i expect motor skills and other problems like that. I recently was put on Remicade. We moved it to every 6 weeks though because I really am not finding it affective. I know this is a lot of different ends and questions in one, but could really appreciate any feedback. Its 330 am here and its because I have been so stressed. They just found out it was Neuro. The neurologist wasn't very clear and readings on the internet I have gotten mixed findings. Thank you! I haven't posted much because I have been nervous and maybe embarrassed and overwhelmed with how much this has all taken. Im only 28, but feel like a 78 year old man. Especially because the osteoporosis and hormone replacement.Just i really am overwhelmed with the Neuro Behcet's finding for this week. I sorry if this just sounds like rambling, im not good at this whole support thing.

6 Replies


I too was diagnosed recently with Neuro BD. It was a relief to know, as I'd been experiencing really odd problems; from loss of feeling in my tongue and forearm through to tremors and slurred speech. I felt like it looked like I was drunk! Have been on Azathioprine for 6 weeks. I think I'm starting to see a difference. Hard to tell though as my flare was ending when I started it. July was a write off. I went to work each day, but probably shouldn't have.

My ongoing Neuro issue is a shingles like sensation across my back and down my shoulder. It feels more extreme when I'm tired or stressed.

I am feeling much better than I was a couple of months ago. I am trying not to do too much or waste "spoons" of energy on irrelevant things.

I know you must be upset and scared. Hope this helps.


Hi Dmartin, I started withBD at 17 and at 41 have formally been diagnosed, started colchicine and feeling a great deal better. My 11 year old also has BD but far worse than myself. Now on heaps of meds she also has Infliximab every 6 weeks. I'm just letting you know it took 3 months for it to work but when it did my daughter looks alive and beautiful. We have also been able to get her off steroids.

You are with friends here and we will all try and help any way possible.


Sorry I should have said that it's important for you to know that meds may take different lengths of time to woke on different people.


thanks guys. yah the slurred speech in the middle of my debate class really freaked me out and Im worried about the brain stem issues. The remicade we are on about 3 months now and the steroids its been 11 years so i know that Adrenal glands dont turn back on once theey turn off so it is hard to lower the steroids. That shingles sensation might be fibromyalgia. I have gotten a shingles outbreak but the fibro I feel everyday and has that feeling MSR. Its hard to determine what is relevant and what isnt. I am waiting for this damn pre approval for the MRI of the brain because of swelling. I dont know. I dont know what there is to do beyond Remicade The rheumatologist made it sound like remicade is last of the road..Ive done colchine, imuran, humira, enbrel. i mean we even did a chemo Cytoxan at one ppoint and that was a disaster. Michja i definitely know about the different lengths, but I dont know it feels like they dont understand the pain that is involved. Thank you though. I appreciate the responses. I really do.


Hello, Dmartin:

I was diagnosed with Neurobehçet, will do in the next two years in December.

I live with BD for nearly 35 years. I was diagnosed around 24 years of my age.

I went through almost all the symptoms that are described in the context of disease.

I was lucky - and for about 15 years had a remission, punctuated with a few quick spurts and especially in the digestive organs ever listed them with BD. But all belonged to the same frame. The BD controls organisms where it is revealed.

Two years ago - and suddenly, after months of much stress, I fell to the side and was attacked in his eyes. Brain (lesions) and eyes (uveitis).

I've been in treatment - 1 year - out of the day to day work, taking colchicine (5 per day), ciclosporine (250 mlg daily) and prednisolone (100 mlg daily). Doses were falling gradually but never reached the values ​​for maintenance. The values ​​were always high.

At the end of that first year - my liver rejected ciclosporine and cataracts appeared to me that left me almost without seeing the end of 6 months.

From there - only steroids and colchicine, helped by statins, drugs to counteract high blood pressure and potassium chloride (to combat the lack of this in the muscles) - have been my medicine.

However, I was operated successfully for 1 month ago, the two eyes.

I see very well now - but I know that outbreaks of uveitis will continue to appear.

If I can help, I'm here.

A friendly warning - for those who have BD:

1 - No stress, no stress, no stress ever. Not facilitate.

2 - Rose - is essential - in all that relates to the eyes - treat yourself with an ophthalmologist specialist in immunology.

3 - It is essential to be accompanied by an expert 'Immunology' and monitor and advise all other medical colleagues from other specialties: is my best advice.

All the best.




Hi Dmartin,

Sorry to hear about your neuro BD diagnosis. How long have you been suffering with BD? They say that sometimes it starts attacking the brain after several years of other symptoms. Just to share my experience with neuro - I have several brain lesions on MRI and a lumber puncture that showed no inflammation but raised IgM and IgG levels - antibodies produced by the immune system showing that it's attacking my brain.

I had a major flare 5 months ago with pain behind my neck, between my shoulder blades, bladder spasms and pain, electrical shots sensations, changed perceptions, blurred vision, headaches and one time difficulty articulating. Also immense fatigue, muscle weakness in the arms and needles and pins. I also get easily angry or emotional when it starts attacking my brain (even mild attacks). Since the flare some of the symptoms have been slowly fading. However I get 2 to 4 milder attacks weekly, usually when I change my sleep pattern or do more work than usual. They almost always happen in the morning and it's usually pain behind the neck, confusion, headache and muscle weakness, fatigue.

So far I have only taken anti inflammatories and 2 cortisone shots. Also vitamine d, b12, curcumin.

A while ago I posted here some links to articles on neuro behcet. If you search for Lara1 you will find my posts. I will also post some more information when I get more test results back.

Good luck to you and keep posting.



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