The Multiple System Atrophy Coalition: A Call to Action

Multiple system atrophy is a rare and terminal neurodegenerative disease. It takes away many things from patients as it progresses, but MSA can't take.....

[@cherylbright4740]

My husband has seen several doctors and he is passing out has up and down blood pressures and his feet and hands are cold all the time.. has has been in the hospital for highes and too low blood pressures... finally a doctor at an Er found a lesion in his skull and referred him to a neurosurgeon.. which actually witnessed him about to pass out...and said he didn't think it was anything at this time with the lesions and he would check back on that in August. . He said but I think you have bigger fish to fry and gave us information on MSA which I had never heard of.. had heard of Parkinsons disease. . It is very difficult.. going today for more scans..he has lost 2 jobs..

[@guido8620]

Im 30 now and lost my dad at the age of 19 due to MSA. The only advice I can give you is please cherish the good moments. He will not recover he will deteriorate. Sorry for the harsh words but that is how it is... If you want to talk please seak out mental health groups..

[@matthewchen9755]

Hi, My father was diagnosed MSA. I have been keep tracing the progress of phase3 clinical trial of Verdiperstat, one possible medicine for MSA which researched and developed by Bioheaven. But unfortunately recently I was told that the phase3 clinical trial was not as successful as expected, and they decided to suspend the progress based on the result. Do you have any updates about the treatment for MSA?

[@tracieparks370]

My husband was diagnosed with young onset Parkinsons in 2017 (he is 48). His condition progressed fairly rapidly. It started on the right side. It's starting to move to the left but not too extreme yet. But from 2017 to now, he has had to quit is job, he falls often, has difficulty eating, etc. A Duke neurologist diagnosed him with MSA. He wanted a 2nd opinion so he is being seen currently by a neurologist at a Veteran Affairs PD center. They are confused and basically said "i dont know if it's a bad case of Parkinsons or a mild case of MSA". He wants the brain surgery to have dopamine inserted continuously but they wont do it until they make a diagnosis because it wont work if he has MSA. We feel lost with what to do and what to expect.

[@Sandy-cn5lt]

Thanks for sharing your journey. My neurologist suspects MSA because I have not responded to DBS surgery that I had a littl over year ago. The main reason I dont agree with the MSA dx is because I was always told "if it's not Parkinson's-you won't respond to the carbadopa (which was the mainstream medication prescribed at the on.set. in 2011). Well now my speech is lacking AND I'm very prone to falls can only walk from one object to the next.....

[@arjunharikumar9040]

Is he responding well to levadopa and other anti parkinsonism drugs if he is then chances of MSA is less in males prominent and earliest sign is impotence. Followed by autonomic symptoms. It is also called shy drager syndrome

[@arjunharikumar9040]

@@Sandy-cn5lt frequent falls and dementia and ophthalmoplegia are symptoms of progressive supranuclear palsy

[@Sandy-cn5lt]

Hush-'Another dx? What is opthaĺi....?

[@michaelbly5499]

Recently diagnosed with MSA, I'm 51 and need help with housing. Can anyone help with who I can contact? Regards, Mike

[@MissionMSA]

Hi Michael - Please call our hotline at 866-737-5999. Our volunteers may have some suggestions on groups to contact.

[@sohaibsardar8682]

I want to need help

[@stgtggsg8038]

Michael Bly are you taking or have taken Statin Medications?