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Parkinson's plus Multiple System Atrophy (MSA)
Parkinson's Disease | Last Active: Dec 10 8:38am | Replies (63)Comment receiving replies
My husband was diagnosed with Multiple System Atrophy (MSA), a very rare Parkinson's Plus disease. I was diagnosed with Parkinson's disease 14 years ago. His earliest symptom was Rem behavior sleep disorder (acting out dreams) which occurred about twenty years prior to his diagnosis. He was diagnosed in 2021 and passed away in 2024. There are two types of this disease: MSA-P (Parkinson's symptoms dominate) and MSA-C (Cerebellar symptoms dominate). This disease is often diagnosed as Parkinson's disease and later changed to MSA when disease progression is fast, does not respond to Parkinson's medications, and has early and more severe symptoms. Wild blood pressure fluctuations are a red flag for this disease. Average life expectancy after symptoms occur is 6-9 years.
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Hello @popo1 and @iris2 and welcome to Mayo Connect.
I am glad that you found this forum. Mayo Connect is a great place to receive and give encouragement and information.
@iris2, I'm sorry to hear of your husband's passing. From your post, it appears as if you also have been diagnosed with PD. Is my understanding correct? If so, how are you doing? Are your symptoms controlled with medication and exercise?
@popo1, I see that you are looking for a neurologist who might specialize in the diagnosis and treatment of MSA. Here is a link to the Mayo Clinic website where they discuss how Mayo cares for patients with this diagnosis, https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/care-at-mayo-clinic/mac-20356160. If you would like to schedule an appointment to be seen at a Mayo location, here is a link with appointment information, http://mayocl.in/1mtmR63.
If an appointment at Mayo is not possible for any reason, here is a link to a WebMD website where MSA specialists are listed by area, https://www.webmd.com/brain/what-is-multiple-system-atrophy. Just click at the top of the screen where it says, "Find a Doctor."
@popo1, what are your most troublesome symptoms now?