Parkinson's plus Multiple System Atrophy (MSA)

My husband has been taking carpidopa levadopa since his diagnosis (8 yrs ago). He has taken it three times a day until his cancer symptoms acted up this past year and now he takes an extended dose at night. So at present he takes three tabs three times a day and extended at night so something 4 times a day but it does seem to help. He also takes gabapentin twice daily. I honestly can’t remember when they added it.

Hallo, i was diagnosed 2 1/2 years ago. I’m a 63-year old woman. Strengheid to u!!!

i am happy to have found this topic/site. i was positively dx'd with PD 4-5 yrs ago, through DAT scan, symptoms. Meds for PD only make symptoms worse and give me more.; i.e. brain fog/stupor, balance issues, freezing of limbs, etc... I've spent years now trying to control symptoms with supplements - to some degree off sucess.

i recently saw MSA and was shocked to see i suffer 110% of the symptoms of this disease.

as the 5 area neurologists i have seen are intransigent to considering anything but PD:
What is the best way to find a Dr. willing to look?

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.

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?

My mother who was 71 years old passed away on 28th February 2025. She was diagnosed with Parkinson's disease and dementia on 16th November 2024. The doctors prescribed syndopa as the primary medicine. However with the intake of syndopa my mother's condition worsened rapidly. We consulted different doctors. The does of syndopa was increased by doctors. Gradually she became totally incapable of walking and was bed ridden since 25th December 2024. She had lost her ability to speak and recognize people. She could not even sit without support. She passed away on 28th Feb 2025.
Can any one explain why this happened so fast where the literature says that the disease takes 5-10 years to progress. How did it grow so fast that within 3 months my mother passed away.

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.

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.

iris2 - thank you for the well wishes. i've run through 6 MDS's so far. they all seem to follow the same script - ignore the patient and just push C/L...which really does nothing for me. i happy to hear it does help you. continued luck on your journey...

Hello,

My husband was an MSA patient at Mayo Clinic. As his spouse of 32 years and caregiver for seven, I joined Defeat MSA Alliance as an advisor, in hope that I can help other families navigate their MSA journey. I have been charged with researching grants that may help MSA patients and their families. Can anyone at Mayo point me in the right direction.

Thank you,
Jodi O'Toole