Stan,
I will go back to before I was diagnosed. The month before I got married (Dec 1996) I had a massive case of strep and mono. I was sick still when i got married (i was 20 at the time). A few months later i got erythema nodosum on both legs. After that was done and over with I was healthy. Had my son two years later. Was healthy except for a bad case of the flu. After my first child I had three miscarriages and finally had my second child 5 years after my first.
During my pregnancy with my second child they couldn't get my pulse in my left arm. They never looked into it. The nurse would always just go to my right arm. I am positive I had the TA when i was pregnant with my daughter but because I was pregnant It put the disease in "remission" for awhile. Three months after she was born i got UVeitis (inflammation in the eye). It was the worst thing I have ever gone through medically. I was so sick, was given the wrong prescription, trip to the ER, got shingles, gave my children chicken pox. It was a miserable time that seemed to go on forever.
I was pretty much sickly from the time I was diagnosed with UVeitis for the next 18 months. Had low grade fever, weight loss, night sweats, double vision, arm would go numb, feet were cold, pain in the left side of my neck...in general classic symptoms of an auto immune disease. We moved during this time from Lake Havasu City to Dallas. I didn't have a doctor and didn't think anything serious could be wrong with me. I was young and stupid.
I had lost a lot of weight. I weighed under 100 lbs and I am 5'7". I was having auras daily (like before you have a migraine). My mom, my two kids and I went on vacation to Nebraska (Im originally from Omaha). It was July 22, 1995 and my I was describing what an aura looked like to my mom. She was driving (thank God, I was suppose to drive that morning) to my aunts house. I had a stroke just as my mom was driving by a hospital. I don't remember much but my mom said the she could see the right side of my face was drooping even though I had sun glasses on.
I thought I was dying because every time I woke up another family member was in the ER. I'm talking my brother, aunts, uncles, grandma, cousins and my in-laws showed up from Tulsa. Once my cousin Lisa was bawling saying "She cant die, she is like a sister to me" We joke about it now but when someone has a stroke, they can hear everything people say. Don't talk about them dying in front them.
My husband had to fly in from Dallas. I was in ICU for a few days and I was paralyzed for 24 hours on my right side (from the top of my head to the tip of my toes). I had every test you can imagine. My SED rate was 98. Three days later I had an angiogram and that is when I was diagnosed with TA.
After a week in the hospital I was sent on my way back home with 60 mg of prednisone and coumadin. They had set me up with a neurologist back home who I saw the day after I got back. He is a great doctor. He referred me to a rheumatologist who I saw until we had to move last year to California (which i hate). Two years after I was diagnosed I was having symptoms again. I was seeing a different rheum because of an insurance change. He told me I just had anorexia. I was so mad. I called my old rheum who told me to call my neurologist. He got me in the next day. Two days later I was in the hospital having stints. My arteries on my right side were closing (80-90% occluded). My rheum agreed to manage my medication for free since he wasn't on my insurance then he went above and beyond by getting on my insurance plan. My neurologist wanted to try IVIG so I was on that for a year. It was considered experimental for my disease but he got it covered under my insurance.
By this time they wanted to get me off prednisone so I started methotrexate. Methotrexate and pregnancy are a huge no no. Well I ended up pregnant. I won't bore you with an even longer story but I was told to abort. I refused and she is a perfectly healthy 11 year old today. I was put back on 20 mg of prednisone during my pregnancy but got off it totally after she was born. Fast forward to two years ago, July 22, 2008. Exactly 13 years from the day I had my stroke. My brother died from a methadone overdose. It was the hardest thing I have ever gone through. About a month after my brother died I had my 2nd bout of UVeitis. It took 15 years for it to rear it's ugly head again but I knew what it was immediately. I have been fighting it ever since. I have been UVeitis free for the last 6 months after having a shot in my eye (3rd shot I've had, the first I had the first time around). I went Tuesday and I have it back again. I caught it early though.
My rheumatologist thinks my TA is in remission (or burned out) and has been since I had my third child. My new rheumatologist agrees. I also have reactive arthritis which I was diagnosed with a few days after my 40th birthday. I haven't had too much in the way of pain with the arthritis except for the first flare. It was extremely painful the first time around. Everything is related, the TA, UVeitis and reactive arthritis. I am HLA B27 positive, it is a gene marker for auto immune diseases. I found out that I was HLA B27 positive when I was diagnosed with reactive arthritis.
Currectly I have no symptoms of my TA or reactive arthritis. My UVeitis is back but I caught it early. To recap my TA, my left carotid and subclavian arteries are 100% occluded (or closed). I have no pulse in my left neck or arm. Right side started to occlude so I have stints in my right carotid, subclavian and vertebreal arteries. My left vertebreal artery has reverse flow.
If you were to see me in real life you would never know i had anything wrong with me. I guess that is both a blessing and a curse. Hopefully you will be able to get your disease in remission.
Sorry this got so long.
Julie
