Hi everyone. I'm 31 years old and have had various symptoms for about ten years. I'm going through the diagnostic process and had an MRI today. Can anyone share their experiences with Neuro-Behcets? What were your symptoms? I get some mouth/genital ulcers (very mild), have a history of skin manifestations like erythema nodosom and folliculitis. The most prevalent issues are neuropathy, dizziness, nausea, and headaches right now. I've read that Behcet's can have similar presentation with MS.
My biggest issue with BD is uveitis and the dire prognosis that goes with it.
That being said, I went through something like 5 years having other symptoms similar to what you describe. Went through multiple MRIs, xrays, muscle tests, and even a spinal tap.
It appears to me that my “other symptoms” (headaches, vertigo, nausea, numbness, muscle aches, tingling in the hands, etc) were largely due to other factors.
Vertigo/nausea was due to Benign Paroxysmal Positional Vertigo - relieved by physiotherapy.
Headache - was due to eyes, fatigue. And photosensitivity.
Numbness - no explanation, but it went away(knock on wood).
Muscle pains - negative lab results for electrical stimulation tests. Decreased considerably without medication. Still getting the occasional friendly visits.
Backache /knee pains - degenerative arthritis.
Bottom line: eye involvement with BD is by itself classified as neuro Behçet. But my non-eye issues were not considered neuro Behçet.
That’s very helpful feedback, magician. Thank you! Despite my symptoms, I’m expecting a normal MRI and nerve conduction test (soon), simply because diagnostic results have been “normal” for years.
I’ve had eye issues for years which have also come back normal so far (besides diagnosing dry eye). Time will tell.
Hi Sara, my motto, after the shock of initial diagnosis, is look after yourself the best you can (and keep yourself informed) whilst doing what the doctors tell you.
Quite frankly I have so many aches and pains as well as signs and symptoms I’m sure I would hasten my demise by worrying about all the possibilities. I have been diagnosed with NeuroBehcets Disease. The symptoms are a bit hard to explain because some overlap with peripheral neuropathy. All I can say is I knew I was declining in health rapidly and commented a few times how awful I felt to the neurologist. I lost my balance, and if I leant in one direction I tended to keep going. At times I felt I was ‘walking through wet cement’. Also i get a fatigue which is utterly debilitating. I could go on and on about foggy brain, hand cramps, problems with spacial awareness and a couple of small strokes (which I believe were very significant in their own way). Apparently old lesions have shown up on the MRI but there has been no new disease activity. I’m sure I’ve forgotten something major here (another symptom) but you get the picture. If you want to PM me feel free. Hope that helps, cheers Lesley
PS I’m planning to go on my first holiday since diagnosis eight years ago - a cruise to NZ for two weeks, leaving in a month’s time. A friend is coming along as my carer, just in case.
In my case, my skin was not affected that much, although I had rashes/eczema in the past which my Neurologist suggested were the fist signs before I had more severe attack. I started by having numbness in right side of my face, then my eyes topped moving, causing blurred vision, double vision, loss of balance, eyes didn't blink nor I could close them, nausea, extreme dizziness, headache, joint/muscle pain, then gradually lost my sense of taste, and ... At first it mimicked MS, but with many blood tests, MRI and lumber puncture I was then diagnosed with BD. It all took only a couple of months before I was put on medications and thankfully I'm much better now.
That sounds terrible- especially not being able to close your eyes! I do get the double vision, but that is way down the list on things that trouble me. A doctor pressed me the other day as to what was my worst symptom and in the end I had to say pain - muscles, joints and worst of all when a vein or small artery gets affected, especially in my fingers.
yes, unfortunately my eyes were effected the most, in a way that I couldn't really think about my loss of taste, and muscle pain. it took about 5 months for my eye to recover. Now, I get a slight blurry vision, dizziness when I'm stressed or dehydrated, but I can say that muscle pain and stiffness is my daily signs. I have symptoms similar to you as well, drinking plenty of water helps me the most. Also, I have found that warm foods (you can find warm and cool foods in Chinese and middle east medicine) like nuts, dates, seeds, spices (cinnamon, ginger, turmeric especially) are a big help for all of my symptoms, especially before you go bed.
I have it and have plasma exchange for it. It’s damaged the nerves and muscles in my bowel. I can’t feel down there to push anymore when going to toilet. I’m sick because my bowel obstructs, collapsing and folding like a telescope. I get headaches and can’t move my head. I’ve lost the ability to speak 2 times in the last year and have cognitive deficits. I can’t think like I used to and am very tired and struggle with basic things. My memory is impaired, mainly short term, it’s impacted my ability to form new memories since the NBDS started. It altered my personality too. The plasma exchange is amazing but is a heavy treatment but works, for me it lasted 3 weeks. Only had 1 so far.
Are you put on anticoagulant medication when you do the plasmapharesis procedure? It was prescribed to me but I said no because in the past I had a bad reaction to Clexane.
I had severe allergy to the FRP and got really low blood pressure, but was totally worth it! It just wears off after a few weeks though. I’m desperate to have it again!
I’m dealing with both MS and Behçet’s. Look for my posts, I’ve written about my struggles to get a correct diagnosis since 2013. In a nutshell- I have brain lesions and display symptoms of both diseases - headaches, vertigo, nausea, memory & cognitive issues, brain fog, altered perceptions, but also pins and needles, loss of sensation in my limbs, muscle cramps etc. Just like you, I get mouth ulcers but they are mild. I also have a history of erythema nodosum. The medication that has worked for me so far is colchicine and azathioprine (especially for everything neuro and fatigue). In the past I had a very bad experience with Copaxone.
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