Post Polio Syndrome

Posted by rsb @rsb, Feb 8 2:43pm

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.

Hello @rsb and welcome to Mayo Clinic Connect. Thank you for sharing your history with your Post Polio Syndrome and the hypothesis with regard to your potential for increasing pain. I understand you are pain-free, currently, during the day, however, you suffer from foot and leg pain at night.

I can see you are interested in connecting with members to discuss this more. In my search for members who have mentioned this very syndrome, I have come across @joyhead1 and @bruce0712 in hopes they may have some experiences to share with you.

What have you tried for your pain at night so far?

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Hello @rsb,

I would also like to welcome you to Connect. I am sorry to hear of this painful condition. I would also like to invite @annierae to join this discussion. In a previous post, she mentioned having physical therapy which was helpful. Has physical therapy been suggested to you?

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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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@bruce0712 can you clarify if your request for an appointment was to explore a diagnosis with a specialist or did you focus on obtaining a statement? I am just curious what the approach was that you took when requesting an appointment. Thank you for sharing if comfortable.

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@amandajro

@bruce0712 can you clarify if your request for an appointment was to explore a diagnosis with a specialist or did you focus on obtaining a statement? I am just curious what the approach was that you took when requesting an appointment. Thank you for sharing if comfortable.

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I had never had an evaluation of my overall condition that would focus on everything and as to whether or not any 2 of my conditions are related as well. Just for knowing if treatment for one is affecting treatment for another. That is primary. But my other need is an expert opinion….not necessarily stating as a fact….that my exposure to agent orange chemical more likely than not resulted in the issues I ran into as I aged. There is nobody in my family tree who ever had any of these issues and that goes for siblings, cousins, and all of their offspring. It would be helpful to have someone examine to determine exactly what I am experiencing with regard to hand shaking and plus total arm shaking when carrying a dinner plate, plus entire body shaking when I dance close with someone. A number of times I got commnets from a dance partner "why are you shaking" when I thought my tremors were only in my hands. Seems under certain situations I shake elsewhere.Then the ED issues, low T, anxiety, frequent fatigue and frequent nights of bad sleep. I already have VA benefits but they always assume I am somehiow getting better yet I know things have only steadily gotten worse even though I can function reasonably well as I have learned to try to deal with it all, but doing so affects how I live day to day. Seems I have made my day to day living accomodate my issues.

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@amandajro

Hello @rsb and welcome to Mayo Clinic Connect. Thank you for sharing your history with your Post Polio Syndrome and the hypothesis with regard to your potential for increasing pain. I understand you are pain-free, currently, during the day, however, you suffer from foot and leg pain at night.

I can see you are interested in connecting with members to discuss this more. In my search for members who have mentioned this very syndrome, I have come across @joyhead1 and @bruce0712 in hopes they may have some experiences to share with you.

What have you tried for your pain at night so far?

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Thank you for your response. I have been prescribed so many medications over the years. Since 2011 different physicians have prescribed, and I have taken, Baclo/Amitriptyline ( rubbed into calves), Nabumetone, Gabapentin at different dosages Cyclobenzaprine HCL, Verapamil ER, Ropinirole HCL, Diltiazem, Quinidine Sulfate,Theophylline ER (resulting in an ER visit for rapid heart beat), and Oxcarbazine.

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@hopeful33250

Hello @rsb,

I would also like to welcome you to Connect. I am sorry to hear of this painful condition. I would also like to invite @annierae to join this discussion. In a previous post, she mentioned having physical therapy which was helpful. Has physical therapy been suggested to you?

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Yes, I have sought out physical therapy at different times. It has not offered any relief from nightly leg and foot pain.

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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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@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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Hello @polio, Welcome to Connect. I have no experience with post polio syndrome but I'm wondering if you are familiar or have seen the Polio Place website. It has a list of post-polio clinic directors, health professionals with post-polio expertise, and post-polio support groups along with other resources you might find helpful. It has an online version of the directory that is free or you order a printed version for a fee.

Post-Polio Directory: https://www.polioplace.org/post-polio-directory

Here are some additional resources that are available if you have not already seen them.
— Exercise and Post Polio Syndrome: https://www.neuropt.org/docs/degenerative-diseases-sig/ddsig-fact-sheet-exercise-and-post-polio-syndrome.pdf
— Post-Polio Syndrome Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Post-Polio-Syndrome-Fact-Sheet

Have you looked into getting physical therapy to see if it would help?

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Thanks for all the info. PT hasn’t helped bc it exhausts me & I can’t function for days after.

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@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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@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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