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Is it worth trying to resolve peripheral neuropathy?

Neuropathy | Last Active: Aug 24, 2020 | Replies (38)
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@johnbishop

@mjpm2406 - Thanks for sharing your your experience and knowledge on the gene testing and finding out you have adult-onset Spinal Muscular Atrophy (SMA). I know it's difficult sleeping in a recliner every night only because I spent some time in one at another point in my life when I had some lower back issues. I recently purchased an adjustable bed frame and memory foam mattress which help me. Most of these types of beds have a zero gravity setting (ZG button on a remote). Sleeping in the zero gravity position can reduce pressure from the heart and allow better blood flow throughout the body.

You may have already found the SMA Foundation's website but I thought I would share it just in case you haven't seen it. The site has a link to the DNA Learning Center's Informational SMA Videos here under the General Info about SMA heading: https://smafoundation.org/about-sma/2685-2/

Have you found any therapy or treatments that help with the adult-onset SMA?

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Replies to "@mjpm2406 - Thanks for sharing your your experience and knowledge on the gene testing and finding..."
mjpm2406 | @mjpm2406 | Aug 24, 2020

Hi John,

Thanks for your response. I did find the SMA Foundation website. I actually called them about 9 AM today. No answer so I left my phone #. So many questions as I was only diagnosed a month ago based on the Invitae genetics test. My main problem now is finding a geneticist or neurologist who specializes in Type 4 SMA. I have not been able to find a specialist on Long Island. Several are "pediatric only" practices because most SMA cases involve young children. The CMT thing is tolerable because I know what to expect based on my family history with this disease. To complicate these two disorders, I also have MDS/MPN-RS-T which is an extremely rare blood cancer. I got that from exposure to toxins at Camp LeJeune, NC and from exposure to Dioxin in Vietnam. While I suspect those same toxins may be responsible for the SMA I'll never know for sure. I do know that I am missing the SMN1 gene and now I'm being tested to see how effective the backup SMN2 gene is working. My research indicates that the SMN2 gene normally does not produce enough protein to make up for the loss of the SMN1 gene. But I'll leave that up to the specialist, if I can find one on Long Island or NYC.

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