Neuro Behcets

Behcet's Syndrome
#1

Hello, I have had Behcets since I was 12. I am now 28. Just recently I have had neuro involvement. Has anyone else had these symptoms? I have weaknes in the left leg and numbness. I have bladder control loss and bowel control loss. I also have sexual problems. I cant ejaculate. They gave me an MRI and told me that I had lesions in the brain stem. In the pons and corpus callousam. I am looking for anyone with these symptoms. I need to know if I will ever gain back what I have lost. All I read about Neuro Behcets is very bad and the prognosis is bad and fatal. The docs wanna put me on Immuran or cytoxan. Please, please, if anyone has symptoms like this or knows what Im going through, help me. Please, I am very scared and dont know what to do or what this disease will do next. Is this the end of the road for me? Please help me. Thank you very much.

-Tommy

#2

Please do not hesitate to call me if you can help me with some advise or medications. My number is 201-916-6554. Thank you.

-Tommy

#3

----- Original Message ----
From: Neuro Behcets behcets-cpt7100@lists.careplace.com
To: lnra1@yahoo.com
Sent: Wednesday, December 12, 2007 10:55:18 PM
Subject: [behcets] Neuro Behcets

#4

Hello Tommy, I am Phil.
It sounds like you are having a rough time of it, but the outlook is not always as bad as it seems. So try not to panic, as stressing out only tends to make Behcets worse.
I am 40 and have had Behcets since I was 21 & have had a fair bit of neuro trouble. Had several blood clots in the brain that left some damage. After 1 episode I ended up with very little vision which I suffered from for about 15 years. But about 2 years ago My Consultant put me on a drug called Interferon & that has helped my sight heaps. So much so that last year I was even cleared to drive.

I have had weakness and numbness in both my arms & legs in the past but have always gotten over it, usually with the help of increased prednisolone.

Never had the incontinence bit. I tend to go through spells of ‘dribbling’ which is a pain in the butt :frowning:

As far as sexual problems go, I had plenty of trouble with erectile dysfunction etc… Plagued me for years. My doctor changed my anti-depresant one day because they were not working too well & BINGO. Back to full working order.

Don’t believe everything as gospel that you read on the internet about Behcets. They always tell the worst story & tend to overlook the success’

Immuran is a very good drug. I was on it for 8 years & it does help to keep the flares down.

I have never used Cytoxan, but the wife looked up about it on the internet & it looks like a good drug for your problems.

Ask your Doctor about Interferon. It has helped me lots but didnt work for my wife. She has Behcets too. We met through a Behcets support group.

If you want to email me: predm4n@gmail.com

Take care & all the best,

Phil

#5

Dear Phil - I have heard about you from Bev over the years, but actually having you write for the group to see, makes me really happy. Thank you so much for taking the time to share your success story. Being able to drive after not being able to for a while is so encouraging!!!

Give the ladies a kiss from me and thank you again.

Ruby

predm4n behcets-cpt7100@lists.careplace.com wrote:

#6

Hi Tommy, my husband had the same symptoms and was just about to be catheterized, however he ended up being a trial patient for a non toxic medication but this is not gone through all the trials as yet and therefor not readily available. But the outcome was good, he is no longer having problems with the bowl and bladder and his sexual function is no problem either. So I would say hang on in there when this becomes available it can be reversed as I have seen.

In the meantime look up sexual function with spinal cord injuries because people who have been paralysed from the waist down can still have adequate sexual function as the nerve supply is not just purely spinal. There are other pathways but you will need to research these. So in easy language other pathways can take over from those that have been damaged.

Kind regards Jane