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Review for Multiple System Atrophy Coalition, Charlotte, NC, USA

Rating: 5 stars  

After several years of having no success trying to figure out what was causing all my symptoms, and going to hundreds of doctors, clinics, hospitals, and testing facilities, I finally went looking online for information on anything that had all my symptoms. I was startled to find that MSA had all of them. That led me to the MSA Coalition, and Pam Bower, who were invaluable in helping me find information about MSA, support groups, etc.. They had tons of links to medical articles, and local groups across the US, and a patient-only group of others like me that I could talk to, which has been wonderful. I found I wasn't the only one who was having troubles like these, and not the only one having trouble getting any kind of diagnosis. I was able to get all kinds of help and advice. I am now getting closer to a diagnosis, and was told finally by a new neurologist that I either have MSA-P or Parkinson's. I am waiting results on a brain MRI, taking Carbidopa/Levadopa to see if it stops the tremors I'm getting now, and next step will be a DAT scan. The MSA Coalition has been invaluable in this rare disease, and the neglect it gets from the medical community.

Role:  General Member of the Public