I'd like to talk with other victims of PPS who have been sick again after so long. I am having hard time. thanks Karen
Interested in more discussions like this? Go to the Infectious Diseases group.
Hello @annisobel123 and welcome to Mayo Connect. I am sorry to hear that you are having post-polio symptoms. I'm sure this must be difficult to face. Can you share what symptoms are the most bothersome to you right now?
We do have some other members who have had post-polio syndrome, @bruce0712 and @joyhead1. Perhaps they will join this discussion and explain their problems with this as well. Here is a link to one of Connect's discussions on this topic. https://connect.mayoclinic.org/discussion/essential-tremors-and-post-polio-syndrome-and-agent-orange-exposure/?pg=2
In the meantime, what kind of doctor are you seeing for this problem? What suggestions have you been given to treat the symptoms?
I was 2. I don't remember it. It was in my neck, I am always fatigued in my upper body BUT thankfully I can get around all right, however complicating this is I was actually drafted into the Vietnam War, I told them I had polio, they said "you look fine", then I was exposed to agent orange chemicals, this confirmed by the military. I later found I had essential tremors in both hand, my beautiful handwriting went bad, and recently a neuroolgist said I showed "parkinsonism". The VA has denied any of those issues are a result of the agent orange. So in my case, i have no idea what caused what, but the government always denies all veteran claims. I struggle every day. Just typing this out, now my neck hurts. Hope you are able to at least be able to do your day to day.
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I caN't walk. That leaves a lot of the obvious. As to treatment, I don't think anyone has answered.
If you have any answers let me know. Over the years I believe swimming kept me standing and walkng with a cane. I no longer have pool access. So if you can, try to swim several times a week. Great feeling to move and do things I couldn't on land. Good luck and God willing it won't return
as it has to me.
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