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Lori's Story

Hi to everyone!

As everyone else, its hard to know where to start except at the beginning. I am 39yrs old and over the years have had various symptoms with being in and out of the Dr.'s constantly.

Many of them think I'm nuts, I'm sure. When I was a kid I was forever getting bronchial infections and on antibiotics and suffered from constipation. I also used to get boils and mouth ulcers during my teens and twenties but have not had "skin" lesions but always have had easy bruising. My mother reminds me that as a kid I used to complain about my joints and legs hurting. I was tested for Rheumatic Fever-only to be negative.
No other tests were done. I was extremely active and into sports but that changed. Later on around the age of 18-19 I started in with pain in my pelvic area and after being in & out of the Dr.'s being told I had PID I was constantly being placed on antibiotics.
Eventually, I was told I had endometriosis and had two laproscopies and then later a total hysterectomy by age 30. Prior to these surgeries, I had much pain with my legs which I still have. They ached, felt swollen, heavy and cold. It was noticed on an ultra sound that all the veins in my abdomen were grossly huge and they were snipped off during my hysterectomy. No cause was ever given as to how they got like that and that possibly what he did would "alleviate" the pain. But I still have this problem.

A year or so after these surgeries I got real sick and was diagnosed with Ulcerative colitis and placed in the hospital for nine days.
It was then I began taking Prednisone and for a short while Asacol (which didn't help) for seven years straight. I was on as maintenance 5mg per day. Two years ago I was taken off Prednisone due to my colonscopies reflecting me in total remission. And during those seven years felt pretty good.
As I began weaning off, all these symptoms began and have only gotten worse. Initially I thought these symptoms were from steroid use, but I've been told by several Dr.'s that I was not on enough to cause them. I immediately broke out with a severe attack of genital Herpes-inwhich the culture read positive. In 1989 my gynecologist cultured me (I found out) for Herpes with a negative read. I also began having neurological (personality changes), memory loss, vision problems, that problem with my legs got worse along with feeling like I have arthritis throughout my whole body, anxiety & panic attacks, spine feels so sore all up and down (which bothered me a lot during my stay in the hospital with UC), pain & swelling in my abdomen which is very tender for a Dr to push or feel around, some headaches, neck & shoulder pain with numbness down my left arm and hand (which has been diagnosed as Carpal Tunnel).
The pressure I felt in my eyes, lower body and personality changes caused me to leave my job (banking) after 12 yrs. I have for the last year been on this seemingly endless mission to find out "whats wrong" with me only recently being told I may have this disease called "Behcets".

I am going through more tests which next week will be having an MRI of my brain and spine to rule out MS and look for abnormalties. Right now, I've been placed back on just 5mg of Prednisone to maybe alleviate symptoms and Darvocet for pain. Which neither does much. I hurt so bad some days I just can't get out of bed and even look "ill". Just doing light housework and getting dinner is a big deal for me.

Everything seems to point in the direction of Behcets, but who knows what the diagnosis will be....if anything.
At times, I feel like I'm nuts and so do a lot of other people, I'm sure. But I know I'm not and that there's a "real" problem going on. My legs hurt me so bad that I when I kneel it feels like all the circulation is cutoff and standing back up causes burning & tingling. Some days you get so scared or angry or you just want to give up.
But I've always been a strong person and keep telling myself I won't let this get me down (even though it has) and I WILL find out what's wrong. But still many days are tough to get through. My husband has been left to pay all the bills and he is struggling and NOT understanding what's going on with me. If only I could tell him what was.....I wish I could.

I have learned so much through the internet which is about all I'm doing these days. This site is one of the best I've come across pertaining to Behcets and I'm sure I will visit it often.

Strength & Love to Everyone!!!