Neuro-Behcets / MS symptoms: Hi everyone. I'm 3... - Behçet's UK

Behçet's UK

5,404 members4,393 posts

Neuro-Behcets / MS symptoms

12 Replies

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.

Thanks in advance!

Sara

12 Replies
magician profile image
magician

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.

Wishing you all the best

in reply tomagician

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.

Thanks,

Sara

lesleyg profile image
lesleyg

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.

taparoo profile image
taparoo

Hi,

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.

wish you all the best :)

lesleyg profile image
lesleyg in reply totaparoo

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.

taparoo profile image
taparoo in reply tolesleyg

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.

lesleyg profile image
lesleyg in reply totaparoo

Thanks for that information, every bit helps. Do you mean you have a snack or drink before going to bed? Lesley

taparoo profile image
taparoo in reply tolesleyg

I have a glass of water before bed for sure, and sometimes also have one date, or try to have some nuts right after my dinner :)

TomTomC profile image
TomTomC

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.

Lara1 profile image
Lara1 in reply toTomTomC

Hi Tom

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.

TomTomC profile image
TomTomC in reply toLara1

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!

Lara1 profile image
Lara1

Hi Tatefish,

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.

Please pm me if you want to exchange more.

Good luck!

Lara

Not what you're looking for?

You may also like...

Neuro - Behcets Disease

Hello folks, I have had issues with BD for 12 years, including multi-organ and systemic...
GUEVARA profile image

Possible Behcets? HELP.

I'm going crazy, I'm convinced of it. No doctor has been able to figure out what is wrong with me...
DBran profile image

Neuro Bechets

Evening everyone,I'm interested to hear from anyone who has been diagnosed with neuro bechets. How...
Alfaroo profile image

Newly Diagnosed with Neuro-Behcets

anyone have any advice? What this really entails? Does it just mean to expect the same flare ups...
Dmartin138 profile image

Behcets and VA

Hello, my name is Cody. Im 31 and I started having flare ups when I was 15. Of course no one knew...
CodyR profile image

Moderation team

UKADMIN profile image
UKADMINPartner
TonyWT profile image
TonyWTPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.