Anyone have experience with Multiple System Atrophy (MSA)?

Posted by shelleystolfi @shelleystolfi, Apr 23, 2025

Has anyone had any experience with this disease? My husband has been diagnosed with it.

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Profile picture for saganjames @saganjames

He has been dealing with rapid decline for over two years. Many symptoms, from needing help to get up and move, to tremors, to balance problems, and problems with autonomic functions. He has had many visits and treatments from doctors but needs something special that might be out there. Thank you.
Regards,
Sagan

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Have you asked his doctor about any drug trials that he may be eligible for? It’s a slim hope it will be something useful in my opinion, but it is a hope. So sorry.

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Profile picture for saganjames @saganjames

Helping a very ill 53 year-old male. Any success stories or positive information regarding Multiple System Atrophy (MSA)? Many thanks in advance.

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Investigating the below trial now. It may help others too.

Alterity’s lead candidate, ATH434, is an oral agent designed to inhibit the aggregation of pathological proteins implicated in neurodegeneration. ATH434 has been shown preclinically to reduce α-synuclein pathology and preserve neuronal function by restoring normal iron balance in the brain. As an iron chaperone, it has excellent potential to treat Parkinson’s disease as well as various Parkinsonian disorders such as Multiple System Atrophy (MSA). ATH434 successfully completed Phase 1 studies demonstrating the agent is well tolerated and achieved brain levels comparable to efficacious levels in animal models of MSA. ATH434 recently announced positive results from the randomized, double-blind, placebo-controlled Phase 2 clinical trial in patients with early-stage MSA. A second Phase 2 open-label 2 Biomarker trial in patients with more advanced MSA is ongoing. ATH434 has been granted Orphan Drug Designation for the treatment of MSA by the U.S. FDA and the European Commission.
Regards,
Sagan

REPLY
Profile picture for saganjames @saganjames

Investigating the below trial now. It may help others too.

Alterity’s lead candidate, ATH434, is an oral agent designed to inhibit the aggregation of pathological proteins implicated in neurodegeneration. ATH434 has been shown preclinically to reduce α-synuclein pathology and preserve neuronal function by restoring normal iron balance in the brain. As an iron chaperone, it has excellent potential to treat Parkinson’s disease as well as various Parkinsonian disorders such as Multiple System Atrophy (MSA). ATH434 successfully completed Phase 1 studies demonstrating the agent is well tolerated and achieved brain levels comparable to efficacious levels in animal models of MSA. ATH434 recently announced positive results from the randomized, double-blind, placebo-controlled Phase 2 clinical trial in patients with early-stage MSA. A second Phase 2 open-label 2 Biomarker trial in patients with more advanced MSA is ongoing. ATH434 has been granted Orphan Drug Designation for the treatment of MSA by the U.S. FDA and the European Commission.
Regards,
Sagan

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Hi, @saganjames - for anyone who'd like to read more about the Phase I and II completed trials you mentioned, will you provide a citation/link?

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Profile picture for saganjames @saganjames

Helping a very ill 53 year-old male. Any success stories or positive information regarding Multiple System Atrophy (MSA)? Many thanks in advance.

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Hello. I have just recently been diagnosed with MSA - C and P. I do not know much about having both C & P. My memory is extremely short most of the time. I have pretty bad tremors. I have patches called Neupro that helps, but if there is something else that works better I would love to hear about it.

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I have just been diagnosed with MSA. What next?

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Profile picture for philipcgardner @philipcgardner

I have just been diagnosed with MSA. What next?

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Hi-could you please tell me what MSA stand for?-I have multiple sclerosis (MS) and wonder if they’re related at all. Thanks

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Profile picture for philipcgardner @philipcgardner

I have just been diagnosed with MSA. What next?

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MultiSystem Atrophy MSA
is a Neuro degenerative disease
in the Parkinsonism family.
It is not related to MS.

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Profile picture for philipcgardner @philipcgardner

I have just been diagnosed with MSA. What next?

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I have been diagnosed with. MSA-C two years ago.

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Profile picture for philipcgardner @philipcgardner

I have just been diagnosed with MSA. What next?

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Welcome, @philipcgardner. I moved your message to this existing discussion:
- Anyone have experience with Multiple System Atrophy (MSA)? https://connect.mayoclinic.org/discussion/multiple-system-atrophy-1/

I did this so you can connect with fellow members like @cctee @shelleystolfi @saganjames @karinneke6 @ripley77 and others.

Philip, this sounds like a new diagnosis for you. Here's some info from Mayo Clinic about MSA https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153

I bet you have many questions. Do you know what type of MSA you have: Parkinsonian type or cerebellar type?

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