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.
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.
Hi @mollymae18, helping other families navigate multiple system atrophy (MSA) is a wonderful way to honor your husband's legacy and your experience as a caregiver. Mayo Clinic Connect is an online community of patients and caregivers who share experiences.
As a 7-year caregiver, what is one tip you would share with someone new to MSA caregiving?
Hi @mollymae18, helping other families navigate multiple system atrophy (MSA) is a wonderful way to honor your husband's legacy and your experience as a caregiver. Mayo Clinic Connect is an online community of patients and caregivers who share experiences.
As a 7-year caregiver, what is one tip you would share with someone new to MSA caregiving?
Thank you for your kindness. I would recommend seeking out support for both you and your significant other. My husband was originally diagnosed with Parkinson’s and we ran all over the country for years trying to find out why his progression and symptoms did not follow typical PD. I wish we had the correct diagnosis sooner. We would have focused more on our bucket list and time together.
We eventually used our local hospice team for support and that was a true sense of support and compassion.
I am here for other caregivers and happy to offer support.
Thank you for your kindness. I would recommend seeking out support for both you and your significant other. My husband was originally diagnosed with Parkinson’s and we ran all over the country for years trying to find out why his progression and symptoms did not follow typical PD. I wish we had the correct diagnosis sooner. We would have focused more on our bucket list and time together.
We eventually used our local hospice team for support and that was a true sense of support and compassion.
I am here for other caregivers and happy to offer support.
Yes, from what I have read over 85% of cases of MSA are misdiagnosed. While in Florida, we went to a physical therapist who believed, on our first visit, that Ron had MSA and not Parkinson's based on his gait. We had already been seen by movement disorder neurologists and had many tests at Rush and Northwestern in Chicago and Mayo in Rochester.
Based on her observation we went to USF neurology, Dr. Hauser, and had the skin punch biopsy done. The results leaned toward MSA as well. We then went back to Mayo and Ron was seen by Dr. Coon in the MSA clinic. They took all of the history and tests into consideration and believed that the MSA diagnosis was accurate. Ron donated his brain to Mayo and preliminary results confirm MSA.
Yes, from what I have read over 85% of cases of MSA are misdiagnosed. While in Florida, we went to a physical therapist who believed, on our first visit, that Ron had MSA and not Parkinson's based on his gait. We had already been seen by movement disorder neurologists and had many tests at Rush and Northwestern in Chicago and Mayo in Rochester.
Based on her observation we went to USF neurology, Dr. Hauser, and had the skin punch biopsy done. The results leaned toward MSA as well. We then went back to Mayo and Ron was seen by Dr. Coon in the MSA clinic. They took all of the history and tests into consideration and believed that the MSA diagnosis was accurate. Ron donated his brain to Mayo and preliminary results confirm MSA.
i am trying to get a Dx change, unfortunately, from PD to MSA or PSP in hopes of finding better care. it isn't easy as once you have a Dx, just like in the legal system, it seems something overwhelming has to happen to get reconsideration.
FYI- a bot that tries NOT to spew just approved info: 'parkibot.com'
since the link provided at webMd is broken, i found some good info there by asking 'what is parkinsons plus MSA'. including they no longer call it parkinsons plus MSA(PPM) it is now parkinsonism plus syndrome(PPS).
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I waas diagnidrf with MSA-C 2 1/2 years ago. Got worse quickly
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5 ReactionsHi @mollymae18, helping other families navigate multiple system atrophy (MSA) is a wonderful way to honor your husband's legacy and your experience as a caregiver. Mayo Clinic Connect is an online community of patients and caregivers who share experiences.
As a 7-year caregiver, what is one tip you would share with someone new to MSA caregiving?
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5 ReactionsThank you for your kindness. I would recommend seeking out support for both you and your significant other. My husband was originally diagnosed with Parkinson’s and we ran all over the country for years trying to find out why his progression and symptoms did not follow typical PD. I wish we had the correct diagnosis sooner. We would have focused more on our bucket list and time together.
We eventually used our local hospice team for support and that was a true sense of support and compassion.
I am here for other caregivers and happy to offer support.
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Hug
6 ReactionsHello @mollymae18,
I would like to join @lisalucier in welcoming you to Mayo Connect. As Lisa said in her post, your experience as a caregiver is invaluable to others facing this devastating disorder. I would also like to direct your attention to the Connect Caregiver's Support Group. Here are the links to those discussions,
https://connect.mayoclinic.org/group/caregivers/ and https://connect.mayoclinic.org/group/caregivers-dementia/
I can only imagine the frustration of dealing with an incorrect diagnosis. Could you share how you finally obtained the correct diagnosis of MSA?
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4 ReactionsYes, from what I have read over 85% of cases of MSA are misdiagnosed. While in Florida, we went to a physical therapist who believed, on our first visit, that Ron had MSA and not Parkinson's based on his gait. We had already been seen by movement disorder neurologists and had many tests at Rush and Northwestern in Chicago and Mayo in Rochester.
Based on her observation we went to USF neurology, Dr. Hauser, and had the skin punch biopsy done. The results leaned toward MSA as well. We then went back to Mayo and Ron was seen by Dr. Coon in the MSA clinic. They took all of the history and tests into consideration and believed that the MSA diagnosis was accurate. Ron donated his brain to Mayo and preliminary results confirm MSA.
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5 ReactionsCan you give more info on how the skin biopsy leaned towards MSA rather than Parkinson’s?
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3 Reactionsi am trying to get a Dx change, unfortunately, from PD to MSA or PSP in hopes of finding better care. it isn't easy as once you have a Dx, just like in the legal system, it seems something overwhelming has to happen to get reconsideration.
FYI- a bot that tries NOT to spew just approved info: 'parkibot.com'
since the link provided at webMd is broken, i found some good info there by asking 'what is parkinsons plus MSA'. including they no longer call it parkinsons plus MSA(PPM) it is now parkinsonism plus syndrome(PPS).
i hope this is helpful
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2 Reactions