I am a 57 year old wife,mother and grandmother. My symptoms first started in 1980. First noticed having trouble speakingand walking with a gait. I went to Cleveland Clinic in 1984 where I was one of the first patients to have an MRI> I was given a tensilon test witch I passed. The Dr. put me on Mestinon and told me to come back in a year. They didn't have a diagnosis. He said that it could be a rare form of Dystrophy. Leaving his office he said that I was like a rare bird. Which didn't make me very happy. From that time until the next time I saw a neurologist I became very depressed.
1985 I went to stong Memorial Hospital in Rochester NY> there I was diagnosised with severe depression. Put my on Impriamine and told me to see a Psychatrist in my home town. I found a support group at the mental health clinic and became a patient there where I received my medication. I was diagnosised with panic attacks and put on Xanax.
As the years passed I seemed to be getting worse losing my balance .1993 saw a neurologist in Royal Oak Michigan. Another MRI which still showed nothing.testing my vocal cords they said they were very weak and the camara showed that I had very little movement when trying to talk. This was the first time the Dr. had mentioned I might have parkinsons but he didn't really think that I had it another dead end.
In 2005 I went to Dent Neuroligical Clinic. At this point in time I was falling alot had stiffness in my left arm Still had a gait, speech was at a whispermy hand writing had become very small and illegible. I had another MRI. The Dr. basically said that It was all in my head.but he would refer me to a movement specialist at Jacobs Neuroligical Clinic at Buffallo General In Buffalo, NY.
Dr. Tom Guttuso my neuroligist since 2005 finally gave me a diagnosis that I could live with he said that a had a movement disorder. I gave him a big hug and my daughter explained to him that I was finally happy because he gave me something that no other Dr. had given me an answer.After extensive testing he gave me the diagnosis with a name Striatonigal Degeneration a form of MSA.
At the present time I am not on any medication for SND because none has seemed to help with my symptoms although I do have more rigidity in my left arm and left leg and ankle, back and neckI can live with it and I have left my health in Gods hands. I have a very close family who have been very supportive of me.I live with my husband of 36 years and my 2 sons and daughter and their families live within five minutes of us.
My maternal grandmother had some of my symptoms. Hers started at the age of 50. She had difficulty walking and lost her balance and fell a lot. I think that maybe we could have the same thing. If it is herediary I want to know what my children and grandchildren need to look for.. Hopefully they will find a cure in the near future. I do support stem cell research and I think that it can be in our future.
0 for others
Oct 20, 2007
Jun 16, 2017