Post Polio Syndrome

Posted by rsb @rsb, Feb 8, 2021

I received a tentative diagnosis of Post Polio Syndrome from a Mayo Clinic doctor in the last 10 years and have subsequently seen local neurologists. I had head/neck polio when I was about 10 years old and am now an active 84 year old female. I have a pronounced curvature of the spine and lost my sense of smell and taste about 5 years ago. I have foot and leg pain that wakes me up multiple times at night, but rarely experience pain during the day. Many pharmaceuticals have been prescribed from which there is no relief, nor has there been any improvement from physical therapy.

One hypothesis I have read regarding the pain is that the polio virus is transmitted via muscle to nerve cells, a percentage of which become damaged. The surviving nerve cells do yeoman's work and "wear out" prematurely. If this hypothesis is correct or even if it is off base, can I expect an ever increasing painful experience for which nothing, short of strong pain relievers, can be suggested? I do not take any medication for pain.

Interested in more discussions like this? Go to the Brain & Nervous System group.

@bruce0712

I did attempt to find a doctor at the Mayo Clinic who would evaluate my tremors as it relates to my having polio when I was almost 2 years old. I was trying to also find a specialist who would make a statement that says that my exposure to Agent Orange while I served in Vietnam is not necessarily certain, but more than likely the cause of my tremors plus that this could well be post polio syndrome. I ache every day, my tremors are every day, if I hold a plate in my hand trying to serve myself at a buffet, my entire arm shakes, it LOOKS like Parkinson's yet I can't find anyone willing to diagnose me. I am now almost 69. In my phone conversation with someone at the Mayo (phone appointment) the lady told me that the Mayo could not make any such appointment for me. I was so disappointed. I just wanted a diagnosis of the overall picture relative to tremor/fatigue/post-polio/dioxin/anxiety and even my lack of testosterone. I feel like a mess. I really don't know where to turn, especially when the Mayo turns me down, they are only 90 minutes away from me 🙁

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I am empathetic as I too have tremors probably caused from the PPS I am recently experiencing. I suddenly cannot stand, walk and am living in bed with diapers. Has anyone found relief?
Swimming helped long ago but I haven't access to a pool.

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@annisobel123

I am empathetic as I too have tremors probably caused from the PPS I am recently experiencing. I suddenly cannot stand, walk and am living in bed with diapers. Has anyone found relief?
Swimming helped long ago but I haven't access to a pool.

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Hi @annisobel123, Did you see the reply to your discussion by @hopeful33250 here? – https://connect.mayoclinic.org/comment/641126/. She shared another discussion started by @bruce0712 that you might find helpful.

Essential tremors and post polio syndrome and agent orange exposure: https://connect.mayoclinic.org/discussion/essential-tremors-and-post-polio-syndrome-and-agent-orange-exposure/

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