New development in my case - no lesion on my spine MRI which is making the multiple sclerosis diagnosis less probable. Next week I am having a lumbar puncture to definitely exclude / confirm it. I am personally more and more convinced it's a clear case of neuro behcet with arthritis.
I have a question related to prednisone and immunosuppressants - has anyone experienced a reactivation of latent infections such as shingles or herpes while on these drugs as a result of immune suppression? If yes, how long after starting treatment?
Thanks and best of luck to everyone!
I am also attaching some research links to neuro behcet cases.
What are your neuro symptoms , out of curiosity? I started a flare almost 11 months ago and was on (high doses) prednisone for almost 10 mos straight. Tried to wean after few months but major symptoms reappeared. Currently am on Enbrel, plaquenil, anti inflammatories. Was SO AFRAID TO GET the above mentioned shingles, etc from knocked out immune system. No signs at all of any of that. Not sure if it's because immune system still has not been quieted down? Still sweat profusely, hot painful joints, sores on skin and newer symptoms: hoarse voice and extremities go numb/ fall asleep/ pins and needles when I lay down only.
So no worries yet with immune suppressants(knock on wood!) Curious about your experience with neuro. I have had bad episodes of vertigo, migraines on and off during and between flares. I will read the articles..thanks for including them
Thanks for your reply. My neuro symptoms started very insidiously many years back with light headedness in the morning and slight vertigo. I had it at that level until 2 years ago when I had the hep b vaccine. Then I started getting pain behind my left eye which I now know it is due to optic nerve inflammation. I also started getting numbness in my legs during sitting and in my fingers while sleeping. Then this year I gradually started getting left lobe pain and heat (even my left ear heats up during an attack), strange aches and pains all over my skull, and the scariest - starting a couple of months ago, difficulty speaking once, like my tongue was tied up, weird sensations in my bladder like I have to empty it as soon as it's full, and even pain in it, a lot of difficulty concentrating, and weird sensations as if my brain was getting electrical shots changing my perceptions. I also have personality changes - depression, I get extremely angry or emotional for no reason, paranoia. I can't stand noise. All this is being caused by 2 lesions - one in the cerebellum and one in the corpus callosum and several inflammation spots all over my brain. It has all gotten much worse over the past 4 months due to a particular stressful event at work. Based on the articles, I think I have the secondary progressive type.
I also started getting the skin
and vasculities type of symptoms 7 years back. They are almost gone. At this point arthritis and neuro problems are the worst.
Wow...you have very similar symptoms to me. To which my rheumatologist 'poo poo'ed' most of them as vitamin deficiencies or narcotic side effects. I wish I could speak to someone who knew more about behcet's. However every thing you said , I have: tinnitus(annoying when you want to fall asleep), vertigo( only on and off now) take SERC for that it's great, migraines have not been as active, I have trouble peeing( starting the flow and keeping it going) even though I may have a full bladder, my limbs fall asleep from elbows down and knees down when I'm lying down or sleeping( and no , I do not sleep with my arms under me to cause that - I am laying flat, I've developed a terribly hoarse voice that is now present on a daily basis, I sweat profusely anytime of day or night even when in air conditioning. Funny you say about the crying...it was happening every so often, crying out of the blue for no apparent reasons(in my car , at home, in public places), until this past month when it became a daily thing. My md stated'that's not like you' and put me on a low dose antideppressant/ antianxiety called CELEXA and I feel much better since- no more crying spells. I have always found myself to be short fused and can 'lose it' , and I wish I could change that. You wouldn't know to meet me as I am very personable, talkative and sweet. Last mri was in may and turn up nothing for my head..not sure where to go from there. So glad I am not the only person who gets these things- most people think you are either nuts or hypochondriac if you list even a few of the above sx's. I know it could be way worse and should not complain. I would agree that the arthritis is the worst however, I really don't enjoy the ulcers on the skin as they hurt. Did I forget to mention the 30 lb wait gain from 10 mos of being on steroids..hope you are on it for alot less time! Sorry for going on so much..too bad you are so far away as I am in canada and have never met anyone with BD. Hope you feel better soon
It does get worse before falling asleep! Or maybe that's when I focus on it.. I've also noticed that some nights it's worse than others.
It's so funny you live in Canada.. I lived there too for 5 years. Actually, that's when I got the first neuro symptoms that I was talking about years back. I had no idea it was behcet's related, at that point I had no other signs of the disease. But I did have a couple health issues and the medical system there almost drove me insane..
I would also like to speak to a doctor who really gets this disease. I have a feeling people only understand parts of it and fail to get the big picture. I am considering contacting a professor at the university of Istanbul after I have my lumber puncture result. By the way have you had that done?
I think the forms of behcet's vary geographically based on genetics and I am originally from that part of the world. I am just tired of doctors thinking of it as either a skin or a vascular disease only. It's a disease of the immune system and as far as I understand medicine, our immune system is involved in pretty much every aspect and organ in our bodies. So it can take many forms.
I am currently only on anti inflammatories ibuprofen, aspirin, diclofenac. I have also been taking a vitamin b complex which has helped me get over the worst flare I have had so far.
As far as the psychological symptoms go, I also had no idea it was related to this until I read the fact sheet on neuro behcet on this site. I had a revelation at that point as for many years back I have been experiencing strange mood swings and anger management issues taking a toll on my relationships and people telling me I had changed. Also during one attack 2 weeks ago I was getting this pressure / pain behind my skull and I was enraged for no reason. I felt it stimulating something in my brain that was making me feel this way. So strange and scary. I am considering taking a mood regulator, thanks for the info!
All the best and please do keep in touch. I will be posting here all that I manage to find on this and my personal experiences.
Since starting my treatment i exploded in a rash across my entire upper body front and back very painful spots. my mouth ulcers cleared up so i decided to try to see if the spots would clear.they didn't so i am weaning myself of the prednisolone now under the doctors orders as it has been 6 weeks
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My niece was diagnosed with neuro Behçet’s, she is only 5 years old, does anyone have experience with children? She had seizures and fever
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Need a help 
