Nuerobehcet's: Hello everyone , I have... - Behçet's UK

Behçet's UK

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Hello everyone , I have nuerobehcet's one aspect of which I find most difficult to live with is increasing agitation and irritability . My poor husband is also suffering whilst trying not to annoy me . I am so worried about this problem and the way it is having an impact on our relationship . I find that I want to spend more time alone so that I don't upset him . We love each other dearly but I fear for our future together if I get any worse .

I have just begun Plasma Exchange therapy for temporal cerebral perfusion problems caused by Neuro Behcet's . I would really value any advice or shared experience you might be willing to share with me . I wish all of you luck and courage on this disease rollercoaster journey . Many thanks in anticipation of replies . Manitou .

11 Replies

Hi Manitou, I also have NeuroBehcet’s. I remember reading somewhere that people with Behçet’s like peace and quiet (or get irritated by loud music and noise etc). Fortunately for me I live alone (behind my parents place). It’s difficult to give any advice except to say that in my opinion you are moving into another stage of your life and it’s just an adjustment that has to be made. Try not to worry about it and do things together that are quiet. I like to think I’m fairly even tempered but I do have to bite my tongue at times and you may have to practice doing the same. We are all different so I’m not sure if that’s of any help. PM me if you want to.

Cheers Lesley

manitou in reply to lesleyg

Thanks for replying , sometimes I too feel like living alone especially when I flare .Have you had Plasma Exchange therapy ? I would like to discuss its efficacy with someone who has experienced this treatment .

My neurologist told me that I have perfusion problems in the frontal temporal region of my brain . It sounds scary , and I worry about developing dementia . I already struggle with mild short term memory loss , difficulty with executive decision making and acute agitation . Any advice or experience of Neuro Behcet's would be much appreciated .

Fond regards to all.

Ashveer in reply to manitou

Hi Manitou, I am not sure of your Neuro Behcets, there is complex diagnosis many type, but for your social issues here, our son also same, he has now dysartheria, half blind in left eye, and balance motor skills due to cerebellar peduncle lesion and mid-brain lesions - the relationships are difficult, and for him, he is not married age 32, and wishes to spend life single for what you express here...but we encourage him for relationship with someone, difficult to come by, and certainly don't want anyone taking advantage of him either, Mutual Unconditional love and support is what we aim for each other - the best thing to do I find is to divide your time with balance, some for yourself, and some together, do join some special hobbies just for yourself and be there when they need you, but I would personally limit the small conversations that can become problematic, they do care for you but just don't know the disease and your relationship with it - moreover, eliminating meaningless relationships/financial expenditures outside of your relationship will also calm you down...just giving each other space with respect is most beneficia, having brainstem lesions is not easy for life, as is same in your case...I have not had the medical experience for our Son as you mention, he is on azaithporine 150 mg. a day with 5 mg. predinsone which soon maybe tapered a minimum maybe 2 mg.

manitou in reply to Ashveer

Hello Ashveer , thanks for responding to my text and apologies for not getting back to you sooner . Behcet's is a horrid disease which has a negative impact not only on the patient but on all those who love and care about that person . This site has given a voice to many people , it has given strength and encouragement when times are tough . Best wishes from me to everyone .

Hi there, I have had CNS Involvement with behcets. I’ve had meningitis over a dozen times and suffered from memory loss.

I went back and assessed my life on an elementary level. Turns out I was also b vitamin deficient (this has just come out recently, but was proposed that I’ve had this for almost a decade).

I haven’t had plasma exchange, or steroids, I was on an immunosuppressant for five years and since adjusting my diet- my quality of life has done nothing but increase.

So here’s where I started, and hope you give it an earnest try as well. It takes time for chronic inflammation to leave the body- but I am not kidding when I say- I wish someone would have told me earlier. Coming out of my worst flare ever, doing the following- it took me about a year and a half to get to a half normal. It is slow, but it is well worth it.

Diet- eat only meat/fish, fat and vegetables. No sugar. No fruit ( for the time being). Nothing out of a box or package. No chips. No candy. No pasta/bread/rice.

Get yourself checked for vit d and vitamin b12 and B6 levels. I’m finding more and more people are deficient and these things are rarely checked.

It just came out for me that I have pernicious anemia, at the age of 32, but it had been believed that I’ve had vitamin malabsorption issues since my early 20’s.

Get on a multi strain probiotic, acidophilus is a woman’s best friend, and I couple that with 21 strain nexabiotic (available on Amazon too).

Take a SUBLINGUAL b complex, along with 5000iu vit d daily.

You said short term memory and agitation- you legitimately sound b vitamin deficient. I take a shot now, but the following helped me SO much and allowed me not to have permanent damage :

Take two upon awakening and another two, under the tongue a few hours later. I felt a difference in 10 days with this.

It’s taken me almost a decade to get where I’m at, but I no longer take any meds, I haven’t had an ulcer in about a year, and I’m legitimately in the best health I’ve ever been since 17.

No sugar. Probiotics/b vitamins. DO IT.

manitou in reply to rooser1

Hello Rooser 1 , thanks for replying in such detail to my text . Your suggestions are really helpful and I intend to follow them up . I will let you know how i get on . Wishing you continued good health in the future .

Jeugenio in reply to manitou

Hi! I too have been following a diet of high protein and low carbs with meat/fish, fat and vegetables. No sugar. Limited fruit and Nothing out of a box or package. No chips. No candy. No pasta/bread/rice. and No alcohol. plus, taking vit d and vitamin b12 and magnesium.

I also take cymbalta, Pepcid, Zyrtec daily and a very low dose Of minocycline 4x a week. NO aspirin type medicine including ibuprofen

I have done this for 10 years and it has made all the difference. I have rarely had an ulcer while during this and more importantly have not had meningitis.

Good Luck!

I haven’t had a plasma exchange but would be very interested in hearing about it. This is a very supportive group, sometimes we just need to let off steam and speak to people who understand each other.

manitou in reply to lesleyg

Dear Lesleyg , in reply to your request for information about Plasma Pheresis (Exchange ) , I offer the following :

I have only had two sessions , one in March of this year then a delay of 7months due to Covid , my therapy was restarted last week and my next session will be in December .

The treatment schedule is for 3 consecutive days every two months . It usually takes about three hours from start to finish . It leaves one really tired and a little nauseous . It works by filtering out the offending auto-antibodies in your plasma . It is used in several auto immune diseases . It is particularly useful when treating Neuro Behcet's . It isn't a cure but it depresses inflamation which causes damage in the brain . If treatment is discontinued those harmful antibodies build up again .

I hope this info helps , lots more comprehensive information can be found in the usual places .

Best wishes .

lesleyg in reply to manitou

Thanks, that was very helpful

Have you tried the holistic side there maybe something that can help with the moods but speak to a professional maybe and aurevada practitioner xxx

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