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Parkinson's plus Multiple System Atrophy (MSA)
Parkinson's Disease | Last Active: Mar 27 3:01pm | Replies (57)Comment receiving replies
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?
Replies to "Hello @popo1 and @iris2 and welcome to Mayo Connect. I am glad that you found this..."
stumbling and bumbling around the house(almost falling down 5+ times/day), inability to sit straight (weak or stressed core), bradykinesia (trouble lifting hands to eat - just have to push through it), intention tremors, tapping right foot w/dyskinesia, drooling, constipation(inmotility), endurance, not able to sweat(x13+ years), urinary incontinence, ED.
absolutely the whole gamut of symptoms listed at msa.uk but muscular control is the most troublesome right now.
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Yes, my symptoms are under control with Carbidopa/Levodopa and Amantadine. I am blessed with slow progression and a robust response to medication.
Popol, I strongly urge you to find a Movement Disorder Specialist. My husband saw several neurologists but was not diagnosed until his first visit with an MDS. The disease is so rare that most neurologists never see a case. Good luck.