Hello, my name is
Jeff Jackson and I am a 36 year old, married Behcets sufferer. I live in Harrison
Hot Springs,B.C. Canada, which is about an hour and a half away from Vancouver.
I currently am a member of the Behcets support group list and have been for about
2.0 years and have just recently joined the ABDA listserver.
I was born in late 1962 and had pneumonia by the middle of January 1963. Got my
first bought of canker sores when I was five and was treated with Jension Violet.
Had a ton of different types of rashes and boils and also a bout of pink eye,
till I was in my teens, at 14 I got mono so my doc said (although all tests were
negative) but he insisted that is what it was. Had another bout with mono when
I was 18 and the doc said he was sure but I was a medical mystery.
At 19 I had a my first bout with genital ulcers but I thought I had herpes as
I was quite sexually active. I never went to the doctor as I had no medical at
the time and was extremely embarrassed . They cleared up in about a month on their
own then all was quiet until I was diagnosed with Behcets Disease in the
fall of 1987 when I broke out with literally hundreds of ulcers in my mouth, throughout
and several on my genitals , temp of 104. I was hospitalised for 3 weeks till
they got it under control with iv steroids.
Then I went on living my life like normal having several bouts of ulcers a year,
all sorts of strange rashes on my feet, legs and hands, forearms which every time
I would promptly see my Dr and she would put me on a course of prednisone, or
some sort of cream for the rashes, until Early in 1995. At that time I started
to experience uncontrollable shaking, extreme nausea and vomiting, unsteadiness,
numbness in my extremities, pain in my lower legs, strange painful bruises, visual
disturbances in my right eye and severe headaches. This is when I was diagnosed
with the Nuero variety of Behcets, and also the time I decided to research about
it as I had no idea this disease was that serious, before this I figured I was
too young and good looking to have anything so serious, heheheheh, naive or what?
The medications I mostly have been on or are : Leukeran(Chlorambucil), prednisone,
Losec, plus a variety of painkillers. I was taken off Leukeran in early December
this year as it seems I have grown an immunity to it as it was no longer effective.
I also had several breaks from it in between that time and one 4 month remission,
I am currently on 30 mgs of prednisone, 150mgs of Imuran (Aziathioprene) 40mgs
of losec and just lately I have started taking Serezone an anti-depressant, I
also take the occasional lorazepam for supposed panic attacks, I have my doubts
about that as the pain is very severe and feels to me like some sort of muscle
seizure, but the lorazepam is the only thing that helps, even morphine doesn't
seem to help as I was taking oxycontin for pain, am currently taking oxycets for
pain which is much weaker. I suffer a lot more but I seem to be able to do more,
though. that is what most of my depression is about.
Its like everything is so difficult to do. I am a worker and that is what I like
doing, I am a jouryman bodyman ( tin basher for those in the UK ) and there is
no way I can do that, I can barely clean the house let alone anything else. I
would really like to quit taking this Prednisone as I am having a lot of lower
back pain these days and I believe it is due to the prednisone. My rheumy says
that I also have osteoporosis from it as I went through a bone density test about
two months ago. Also in the last two months my teeth have just fallen apart drastically.
I had them fixed just recently and was lucky that I was able to have them fixed
as my dentist almost had to extract them. My dentist insists that it was from
vomiting two or three times a day as the acid content is very high but my rheumy
has a different opinion. Anyways that is my Behcets story and where I am at now.
Bye for now Panther