I am wife and mother of 3, grandmother to 4 now. Family has always been most important to me above career or outside influences. In days growing up, I think I was fairly active, enjoyed swimming and gymnastics, and continued to be until I was diagnosed with a ruptured disc in my back at age 30. I just lived with what I thought was symptoms that I thought were caused by my back. I had numbness and pain. Since I had vision problems from the time I was 9, I just attributed that to astigmatism and being near-sighted. What seemed strange was my prescription remains to this time very changing.
Anyway, when I finally had a major exaserbation where I couldn't see because it was trying to look through a kaleidoscope with 2-3 lenses mixing everything up, it was terrifying. I literally woke up on June 21, 2000 unable to stand up because of the dizziness and vision without holding to the wall. When I went to my doctor after a couple of days (thinking it would resolve itself), he examined me and after looking it up in a book, he told me I had otitis neuritis, a problem in my inner ear.
After several days of being on valium, (I quess to make me mellow) and antivert to help with the dizziness (which didn't help since the problem wasn't in my ear), my husband took me to the emergency room, where they ran a CATscan. They called in the neurologist who did a brief examination and then told us - well, the good news is you don't have a brain tumor or suffered a brain attack (stroke). He advised that if I didn't sharply improve within 5 days, I should see a specialist who treated brain diseases and have further testing. Talk about pure terror setting in. My best friend as I was growing up had passed at the age of 16, diagnosed with ms at 12. Their were no effective treatments at that time and those who loved her had to watch as this young girl who had danced at the St. Louis Muny Opera quickly became disabled and then died so young. That was my vision of people with neurological diseases and even though I had been having strange symptoms since my early 20's, I had refused to think that something serious might be going on.
Luckily, I found a wonderful doctor who not only diagnosed me but also worked to find a therapy that has worked so well for me. He also reassured me that MS doesn't have to be the great crippler and killer of young adults that it was 30 years ago when it took Linda from us.
Unfortunately, after this exaserbation, it was determined by my doctors that I should not return to work and take disability. I had fired the doctor who took my symptoms so casually and now have a very good internist as well as had an excellent neurologist who unfortunately for me has left private practice and taken a teaching fellowship in Texas. I am still looking for a neurologist that I feel has real empathy for me as the person I am.
I refuse to let this disease rule my life, I know that I have to avoid heat. It wipes me out. Sometimes my grandchildren have to be good and watch a movie instead of going for a walk. Sometimes we may have to eat a salad, instead of me making swiss steak. Those are compromises I make, but I will continue walking inspite of pain. If I have to use a cane at times for balance, I'll do that. I want to spend as much time with my family and friends as I can and make as many memories as I possibly can because I have learned that 1 day you can have what you think of as a long promising future and then wake up the next morning not being able to stand up straight and walk to the bathroom. If I'm lucky, I have a lot of time to make more memories and I want my loved ones to have good memories of me and not that I let this disease rule me.
Apr 07, 2010
Feb 22, 2012