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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.

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tarmansbks | @tarmansbks | Jul 21, 2021
In reply to @polio "I am experiencing all the side effects of post-polio syndrome & I'm looking for a Neurologist..." + (show)
@polio

I am experiencing all the side effects of post-polio syndrome & I'm looking for a Neurologist in the Phila.,/ S. NJ area to find a way to help me walk better without pain in my upper thigh & back. Because I'm 71, most neurologists don't have a lot of knowledge how to help me.
Anyone able to recommend a Dr.?
Thanks.
JW

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If you can't find one in your area, Dr. Subrarmanian at Hershey Medical Center in Hershey is on the list for post polio consultations. I have had to wait 5 months to see him having gotten a referral from my neurologist. You would have to get a referral to him. The contact is Penn State Neuroscience Institute 717-531-3828. I was 10 months old when I had complete paralysis except I could move my eyes. PT does not seem to help, I do take water exercise twice a week in deep water and had been a good lap swimmer for years plus yoga until hip replacements and broken wrists precluded continuing. I have been through multiple attempts to get a brace for my left leg with nothing satisfactory. My left foot is in collapse and the orthopedist said "you would not like me very much if I operated on that foot". I understand the recovery period is extensive with no assurance of success. I will take my chances at age 73.

I think you have to know your body and find a good physiatrist if you can locate one and persist in getting answers. That may be ideal in the absence of locating a post polio specialist. They are very rare.

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1 reply
tarmansbks | @tarmansbks | Jul 21, 2021
In reply to @tarmansbks "If you can't find one in your area, Dr. Subrarmanian at Hershey Medical Center in Hershey..." + (show)
@tarmansbks

If you can't find one in your area, Dr. Subrarmanian at Hershey Medical Center in Hershey is on the list for post polio consultations. I have had to wait 5 months to see him having gotten a referral from my neurologist. You would have to get a referral to him. The contact is Penn State Neuroscience Institute 717-531-3828. I was 10 months old when I had complete paralysis except I could move my eyes. PT does not seem to help, I do take water exercise twice a week in deep water and had been a good lap swimmer for years plus yoga until hip replacements and broken wrists precluded continuing. I have been through multiple attempts to get a brace for my left leg with nothing satisfactory. My left foot is in collapse and the orthopedist said "you would not like me very much if I operated on that foot". I understand the recovery period is extensive with no assurance of success. I will take my chances at age 73.

I think you have to know your body and find a good physiatrist if you can locate one and persist in getting answers. That may be ideal in the absence of locating a post polio specialist. They are very rare.

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I spelled the doctor's name incorrectly it is Thyagarajan Subramanian, MD.

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annisobel123 | @annisobel123 | Oct 28, 2021
In reply to @bruce0712 "I did attempt to find a doctor at the Mayo Clinic who would evaluate my tremors..." + (show)
@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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 29, 2021
In reply to @annisobel123 "I am empathetic as I too have tremors probably caused from the PPS I am recently..." + (show)
@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.

Jump to this post

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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