Right now I am
off work for an undetermined amount of time. I am unable to walk for any distance,
so when I go to the store or out anywhere, where I might have to walk, I have
to use a wheelchair. I have too much joint pain in my ankles, knees, and right
hip and as I try to walk the pain becomes very severe.
When I am just sitting, I feel a tremendous amount of pressure in my joints,
sometimes they feel as though they are going to just pop. This same feeling
affects my jaws, shoulders, wrist and ribs. I almost always have mouth ulcers.
My last outbreak was bad with 38 ulcers and a few clusters of real tiny ones.
The worst one being the inside of my bottom lip, it was as big as a dime. I
only recently had an outbreak of gential ulcers. My eyesight has gotten much
worse this past year. I just purchased progressive lenses five months ago and
already the lense on the right eye seems to be off. I have a history of bells
palsy on the right side of my face and when I am in alot of pain, that side
of my face tends to droop, noticably. My right eye tends to go out of focus
quite often. I also have two lesions on my liver, that the doctors don't know
what they are.
As yet, I have
had no other test, other than a CT scan for my liver. I get head aches that
put me to bed. They are usally accompanied with a stiff neck but no fever. I
developed mouth ulcers seven years ago after surgery on the bone of my left
foot. I was given Tylox for pain, well the Tylox made me deathly ill and two
days after that my mouth broke out in ulcers and I've had them ever since.
I went to several doctors for the mouth ulcers, each time I was told it was
an immune disorder and I would have to learn to live with it.
Regardless of what the doctors say, I still believe that that Tylox did something
and it was what disrupted my immune system. Of course I've been told by every
doctor, that that's not true. I have had two other times in my life that I had
similar syptoms, not to this extent, and my doctors told me I was depressed.
One doctor put me on Zoloft, which in my case had the reverse effect. In a matter
of a few weeks I was in the fetal position and unable to control my emotions.
I cried constantly for hours.
My now ex husband
took me to the doctor, who immediatly took me off the Zoloft. At that point
I decided all doctors were quacks and I was never going back to them again.
I wished I could have stuck to that, but unfortunatly I have no choice but to
seek out help from them.
I have an HMO through my job and it has created a real slow down with this process.
It takes me over a month to go to a specialist. By the way, this has been going
on for one year now.
If I do happen to have Behcets, I would have to say that I have probably had
it for around seven years.
This years episode started with a blood CK level of 1341, it should not be any
higher than 138. Right after that I started to experience the pain in my joints
and started to have alot of difficulty walking. So far this year I have seen
two neurologist and one rheumatologist. They all said they didn't know what
was wrong with me and that I should go back to my primary care physician. I
have had MRI's of my brain and spinal cord. Several blood test. Two Ct scans
of my abdominal and pelvic. I cannot have a doctor push on my stomach during
an exam as I will come off the table in pain. That one really has them stumped.
Although in 1995
I underwent a laperoscopy for adhesions in my pelvic and the doctor took pictures
of the mesenteric area because he was alarmed at the blood vessels, they were
very swollen? My then primary care physician, looked at the pictures briefly,
through them on the counter and told me there was nothing wrong with me.
At that point I do believe they had me convinced it was all in my head. After
all my 19 year marriage was falling apart and my husband had just moved out
and filed for divorce, so I wasn't exactly in a good state of mind. That was
when he put on the Zoloft. My life now is wonderfull! I just got married in
Febuary and I have a great job which I love. I don't think I will be able to
return to work if this does not pass. My job requires alot of walking, bending
and standing. I am truly at a point in my life where everything seems to be
at a standstill. It will be another month before I can get in to see this new
rheumatologist, who is suppose to know about Behcets. In the meantime I sit
here at home unable to really do anything that requires too much physical activity.
I am on predisone at this time, I also take neurotin, prozac and celebrex.
So, anyway I have been researching Behcets and reading all the stories on this web site. am 44 years old and I live in Seffner, Florida. I am a phlebotomist by trade and my hobbies are cooking, gardening, and painting water colors, of flowers. I have to add one more thing. I have a very optomistic, happy go lucky, personality and even with all that is going on with me, I AM NOT DEPRESSED.