Close this page

Ruths' Story

Hi, my name is Ruth and I think I may have Behcets.

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.