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Old 09-17-2001, 08:01 PM   #1
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johnmichael HB User
Post Post Polio Syndrome DRUGS



I've been having a lot of faciculations---lots of muscles all over my body twitch/jump. Doc says this significantly effects my sleep and gave me Dilanthin-- no help. Now going to try Synamet, a Parkinson med. Anyone with PPS tried this? What for? Results? Parkenson people---your comments, please. Thanks,jm

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Old 09-26-2001, 06:27 AM   #2
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babesbarn HB User
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My husband suffers from Post Polio Syndrom. Can I ask you how old you are? My husband is 64. How severe was the polio you had?
Years afterwards your muscles begin to shrink. The twitching is due to the continual pulling and contracting of the muscle. Are you yet having difficulty in swallowing? Some people do not depending on the severity of their polio.
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Old 10-13-2001, 10:03 PM   #3
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Hi; thanks for your reply. I'm now 66 and the symptoms started about 18 months ago. I did not have a severe case, as far as I can remember, but the doctor I go to says I probably had both spinal and bulbar polio (age 8-9). The muscle in my left hand has atrophied and so is the muscle in my left leg---getting worse. I have trouble breathing and my voice is now getting weak. I am beginning to have some swallowing problems---choking.The literature says that our symptoms are/can be independent of how severe our polio was. Please keep in touch. Again, thanks for your response. john michael

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Old 10-25-2001, 06:26 AM   #4
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I've been studying Post Polio for some time. Most people do not realize that polio still exists in places like India. It is unfortunate that no one actually (Except for Dr. Richard Bruno) kept watch on polio through the years. Dr.Bruno is in his 80's now and as far as I can tell most people do not know anything about polio or what to do with people who are now developing symtoms of problems from the original strain they had. My husband is severely suffering. He was the first Easter Seals Poster Child in the 40's. He was at HOme of the Merciful Savior for 6 years while they taught him to care for himself. He was only 22 months old when he contracted Polio from a exposed candy bar.

Do you have problems with any unusual lumps that appear to move around in your back. Those which tend to cause pain? Any excess of Mucus which you must bring up? Any bowel discomfort or difficulty?

My husband never felt any problems though his life for 60 years. Only those of his actual polio epidemic. Then a four years ago he contracted mononucleosis and it finished his strength. He cannot do even the most basic need for himself four years later.
Stay away from anyone who has colds.

Put a sign on your door to Get Lost if you have a sniffle, cold, or even think you have the flu.
This may be lengthy, but I have struggled to care for my wonderful husband and it is pitiful to see how many people just are not studying this post polio syndrome.
Today Kesler Institute has some people they study it is not number one on their list.

Most doctors do not know anything about Polio and are frustrated. So many people join these post polio clubs who have had polio in their leg or something and do not understand what pain is. Only that they think it is a club cause they had polio. Post Polio is serious. And debilitating.

Yes, if you have swallowing difficulty then understand that you need not to take any meds that do not go down easily or you will choke. But I think you know that. I am lengthy here and thank you for disgussing this on this forum. There is another forum but I dont' think that one of them has post polio. They just talk about regular problems and think it is post polio.

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Old 07-25-2006, 03:53 PM   #5
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wannadance HB User
Re: Post Polio Syndrome DRUGS

i really sympathize about the fasci. both large and small.

i found out, by accident, the propranolol (inderal), a very cheap, old, safe, blood pressure medicine (beta blocker type) helps mine. kind of a boring long story, but without a small dose, i am all over the place. with it, much less bad.

talk to doc????

hope it helps. every little bit.

carole
NOT a doctor

 
Old 03-01-2007, 01:47 PM   #6
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goldfinger56 HB User
Re: Post Polio Syndrome DRUGS

sorry to read that your husband is having so many problems, it seems that a lot of strange pains and things go wrong after having polio, the medication I use is oxnyproxy, it was given to me by a dr that had polio also.
I pray life gets better for you all.

 
Old 03-14-2007, 08:00 PM   #7
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Janet W. HB User
Re: Post Polio Syndrome DRUGS

Hi - I have not been on this board for awhile. I had paralytic polio when I was around 4- The last couple of years, i have been getting weaker, more fatiqued and the pain sometimes is well unbearable. The worse I say is in my neck shoulders so much I have problems with spasms. I have seen a few doctors in my area- and like someone said-it is a sad shame doctors do not know enough about PPS - since the Poliovirus was eradicated in the US some years back.

I am going to see a Dr. Richard Bruno- he is ahead of the Polio Institute in Engelwood NJ- he has written a couple of books and has studied Polio and the after affects since the 80's. Very nice man, very intelligent man. Once I start the program- my regular MD here will work with me. So there are alot of info. on websites out there- some good some not so good. But PPS is real and do not let anyone tell you it is NOT...

Best to you all- I do not take pain meds, I want to know what I need to do t help and give me some quality of life back- I do take muscle relaxers only when I absolutely need and on Neurotin for the Nerve Pain- All I can say is find out what you can on Polio and after affects and Listen To Your Bodies..

Be well Bless you Janet

 
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