Carole


I have had ear infections all my life, starting in infancy. In approximately 1985, they had turned so bad, that my ENT decided to do an MRI to determine whether there was a deformity in the ear or if there was some other general cause that had never been discovered as to what was causing them. When I went in for the results, he sat me down and explained to me what needed to be done for my ear - which is not important to my story. However, then told me that he had seen some other problems with the MRI and had made an appointment for me to see a neurologist. He explained that he just wanted to make sure that everything was ok before doing surgery on the ear and that no problems would occur. My appointment with the neurologist was set for the next day, which concerned me because, in San Diego, it simply isn't that easy to get in to see a specialist.

The neuro had reviewed my MRIs and told me that it appeared that I had MS. He wanted to have a spinal done on me as soon as possible to see what it showed. However, based on the number of lesions he found in the MRI, he was certain of the diagnosis. He started asking me questions about any difficulties I was having. When I described my balance problems, my tendency to have my left leg collapse under me, my utter exhaustion and my numbness on my left side, he cancelled the spinal, telling me that there was no need for it. It was a definite diagnosis.

When I next saw my internist who took care of all my regular medical problems, I told him about this. He told me he had suspected it for several years but since there was no treatment for it, he wasn't going to tell me about it. I couldn't believe his answer nor his attitude. Everyone, regardless of treatment options available, should be told of a medical condition.

I ended up going to six different neuro's to have the MRI and the original neuro's notes reviewed. I finally ended up believing the diagnosis in 1987. At the time, there were few resources for the layman to research. I ended up going to the local medical school's libraries to do my research and then reviewing the articles with a friend who is a nurse to have her translate them into something I could understand.

I had to tell my bosses, all attorneys, about the diagnosis. They were quite understanding and let me know that they were willing to make any adjustments to the workplace that I might require. At the time, I was supervising five paralegals. At times, I had to have one of them get research manuals for me because I couldn't lift them. It also explained why I was so dizzy at times that I thought I was losing my mind.

Once the MS meds began coming out, my neuro had me try them, one after another. One caused me to go into heart failure. Two others had no effect on me at all.

I finally had to quit work when I lost control of my bowels and bladder. I filed for disability and had few difficulties getting it. I have been on disability now for almost four years. I am also fortunate enough to have worked at an organization (the state) that provided for my medical/prescriptive insurance to be paid up for life after working there for ten years. I realize that this is a benefit that few have and am eterally grateful.

Recently, I was scheduled to begin Tysabri. My first transfusion was scheduled for a Wednesday. The medicine was withdrawn from the market on Monday. I must admit that I was very selfishly feeling sorry for myself for the first several hours. Then I came to my better self and started feeling bad for the people who had been in the testing group for 2 1/2 years and having amazing results with no problems. From my neuro, I understand there is a possibility of the medicine being re-released by the end of this year but without the Avonex component.

My lesions have now started showing up in the parts of the brain that control comprension, verbal expression, emotions, memory, etc. I have begun putting things in the most interesting places, i.e., milk in the cupboard, clothing in the dryer before washing them, a full gallon of milk in the trash, a half-full gallon of milk in a closet or on the bookshelf, laundry in the refrigerator, etc. I also call things by very strange names at times. Trying to explain something to my husband or one of my daughters can be a very frustrating experience for me, although I am certain it's very entertaining to them at times. They are all extremely supportive, but I'm sure they get very tired of repeating themselves because I can't remember. When we were back in San Diego for my elder daughter's wedding last year, we all went out to dinner. Both of my daughters and my now son-in-law decided to tell me different things at the same time. I couldn't understand a word any of them said. It sounded as though they were each speaking a different language, none of it English. I was in tears for several hours from the complete and utter fustration of it all. I was begging my husband to just put me in a home and let me die. I didn't want to go on like this.

I'm now on Aricept to help with some of these problems. I'm also on anti-depressants to help me deal with the feelings I keep having. I see a therapist to out some of my feelings about the losses I am going through (an idea I strongly suggest for anyone going through the losses caused by MS or any other chronic disease).

On good days, I function as normally as possible. I do my cleaning, shopping (although I have been known to get lost on the way home from the store!), playing with the critters, etc. On that bad days, my husband knows he is going to have to cook dinner and handle some of the other things that have always been my responsibility. I had to turn over the finances to him as I could no longer balance the checkbook.

I try my best to remain optomistic about the future. Thanks to the internet, I am able to research the latest developments and discuss them intelligently with my neuro. I still am looking forward to the possible release of Tysabri this year.

Carole