Hello, My name is Chris and I have just been DX with Behcets after having problems for almost 38 years. I am 47 now.
Let me start by saying that it’s a relief to finally know that there’s a reason for my ulcers, eye problems, joints, rashes and the pain that I have had since I was 9 years old. I have had Mouth ulcers, I’ve had them cover my entire mouth on and underneath my tongue, down my throat and gums, the doctors used Jension violet they burned them out they cut them out biopsy them to no avail.
I always had bouts of tonsillitis and missed school every year .One year I missed a whole month and a half. In 4th grade the school nurse called my mom and said I think your daughter needs glasses. Reason being they couldn’t understand what I wrote in my note books especially Math.....I stated that’s what I copied off the board.
My eyes were pretty bad and glasses I got. I then fell up the front steps and cut my left knee and for the next year I was in and out of the hospital and in traction until one night I awoke in such pain I drove myself to the hospital after 3 syringes of pure blood was drawn from my knee I was admitted. I had antibiotics IV and when they finally did surgery they found that the only thing left of the muscle was a piece that was approx. 2 1/2” by 4 1/2” long that look like a dried up piece of cardboard.
They didn’t have a clue what caused it. I went into the US Navy in 1979 and in 1980 had a Jet engine throw out a tiny piece of metal, which tore my Left eye open. It was here that the Navy found I had Bilateral Maculopathy and Uveitis iritis and retina problems.
This was the first time I had hear of Behcets disease... you see the Navy was also treating me for a bad bout of mouth ulcers and that’s why they thought possibly it could be Behcets but I didn’t have all the symptoms so they didn’t continue any further with the thought of Behcets.
I continued with ulcers and in 1987 I had thought I had pulled my groin muscle and for the next 10 years thought it was my groin muscle until I couldn’t take the pain anymore and could barely walk. I went to my GP only to find out it wasn’t my groin it was my Hip.. I had Osteoarthritis.
I had it in my hips, left knee, lower back and neck. I had been living on advil and then aleive until it just didn’t work anymore. I now take Vioxx . I work in a hospital and had a patient punch me in the mouth putting my teeth thru my upper lip and this flared up a huge bout of ulcers. My doctor put me on Accutane which I have been on in the past for a bad bout of ulcers but this time it didn’t work as well and a month later I had ulcers on my tongue and on the inside of my cheek and throat.
I had joined the Arthritis Foundation and when I was searching their site I found a section on relative diseases and this is where I saw the word Behcets again, I opened the site only to find that a friend of mine whom I had once worked with had Behcets. I emailed her and we talked and she gave me the name of a Rheumatologist of whom I saw on August 7th 2001 and was finally DX.
I was put on Colchicine, and now I take Trental and Decadon Pepcid Vioxx . I also saw an ophthalmologist who found that I had Iritis, inflammation of the macula and changes in the macula as well as a slight uveitis. I was put on Prednisolone drops to help ease the inflammation and pain.
On 27th Aug I had a bad Flare up and lost sight in central vision of left eye. By the 30th Aug. I lost the colour vision in the left eye and some vision in my Right. They discovered I had a lesion way back in the Retina in the left eye, which was slightly leaking...On the 4th of Sept. I had another Flare and notice more changes to my left eye this time they found that my Optic nerve in the eye was all inflamed and swollen
They did an injection into the left eye with a mega dose of Decadron to help control the swelling. I surely kept my eye on the doc when he did that little task. I must say he was pretty good. Now am awaiting approval from my insurance to start Interferon Alpha 2A to hopefully control the eye flare ups to prevent any further damage to my Right eye. Other symptoms that I have had arise within the past 3-4 years were rashes and a stiff and swollen neck more headaches, weakness and feeling tired all the time.
My ankles ache and pain that felt like it was deep down inside my bones. This is just some of 38 years worth of problems... but now I feel that half my battle is won just by being Diagnosis and having one of truly the best Doctors on my side and knowing that all of you share and relate with these problems we face and that we are not alone..... Thank you for sharing your stories it gives us all the strength to fight this together....
CHRIS