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Janet W. 07-06-2006 06:03 AM

Re: What is new with PPS, and do you have it?
Hi, I am new here also. I been searching for a site for polio and after couple of weeks I found this board... I also am on a few other boards. Let me introduce myself- I am a polio survivor. I was diag. with polio when I was 5, born in 56 - doctors thought I was born with it.

I had polio in my left leg which was shorter and smaller than the other. Like all polio survivors- you blocked it out and always tried to excel in everything you could... I know I pushed myself to limits... About 15 years ago(not really sure) my good leg would go completely numb after walking like around a mall- I would rest a minute and continue- than I would get spasms in that leg-
As time went on I started noticing other symptoms- just blew it off as bad back- doctor said could have tendinitis or arthiritis, etc. now my neck remains stiff most of time and last winter I was cold even inside - especially hands and feet... I also notice my memory has lapsed and I at times ache all over- so I told my doctor I had polio when I was a child- and they look at you like your are nuts...

I need to get tests done, at this time I no longer am working been off since last year with problems so I do not have insurance at the time- but have done research on PPS and just wonder if that is going on...

thank you for this site- I hope you are all well
Janet age - 50( Type A Polio Survivor)

handiduba 07-10-2006 11:54 AM

Re: What is new with PPS, and do you have it?
Dear PPS Gang My wife just turned 60 and had polio ast the age of 4 and has keep active with teaching 5-8 year olds, walking,swiming, quilting and belly dancing. 5 years ago she got worried about ostoperosis as her mother was shrinking. She went on Fosamax and off hormones. With in months back and leg pains, was the PPS getting worse. Now Merck-Fosamax warnings about mussel pains and dry eye. She had to give up her contacts and says it hurts to have me hold her. Does this sound familar??

Janet W. 07-10-2006 09:12 PM

Re: What is new with PPS, and do you have it?
I'm not sure, but it sounds like your wife should get this checked out- and make sure you tell the dr. she had polio- my understanding that is hard to find a PPS doctor since polio was eradicated- it is like the forgotten disease- and the doctors now do not take time to study this stuff- they think I could have Fibromylgia or bad arthitis- but without tests- we cannot be sure-

Anyways, I would really get your wife to the doctors sir.

God Bless let us know how she does


handiduba 07-11-2006 06:34 AM

Re: What is new with PPS, and do you have it?
Dear Jannet Well if there is a test or doctor in Central Calif. we haven't tried it must be under the big rock we live near. We have a large (75 member) PPS group sponcered by the local Easter Seals and I have found that most PPSers are by default type A's and have difficultly telling doctors especially the whole truth. How do you get the right doctor to listen to you?

Janet W. 07-11-2006 06:21 PM

Re: What is new with PPS, and do you have it?
That sir is a very good question- my understanding is there are not alot of doctors out there- You try maybe a neurologist and make sure they are familiar with PPS- I am in state of NY and I went on line and searched post polio syndrome - the March of dimes should be able to give you some advise- if you have one near you.

My understanding is there is no test to diag. PPS- but tests through blood work and something called an EMG to rule out other diseases. Does your wife have alot of fatigue and new muscle weaknesses?? You can ask a Rhuemy and make sure they also are aware of Polio and after affects- I myself have not been dx'd - I am in between insurances right now.

Let me know the outcome- it is hard for polio survivors to even want to think that this virus could have after affects, I know when I read some of the stuff, I can't even tell you how I felt.. I can't even imagine the kids that were in iron lungs, and wheel chairs and braces- I was luckier, I had more of a milder case. The best thing I read, is you need to preserve to conserve, eat more protein, watch your weight- it can be controlled not cured... But it is not a death sentence.

Good Luck, Best to you

cattieos 07-19-2006 08:22 PM

Re: What is new with PPS, and do you have it?
My Dad had polio, actually got it from the vaccine. That's a kicker isn't it. I have already posted about it in this thread, but I want to say that we have also looked for drs and tried lots of stuff, actually fish oil was helping,but was making him soooo nasuesas he had to quit it.

wannadance 07-25-2006 05:48 PM

Re: What is new with PPS, and do you have it?
fish oil is so icky! someone told me to take the capsules and freeze them first so you don't burp the flavor and feel sick. haven't got the guts to try it yet...

sometimes, i swear, i am too tired to even _think_ about stuff, esp. late in the evening. my brain just starts short circuiting....

needing a cold boot,


ps - in answer to original question: don't know if there is anything new, none of the doctors in my town had ever seen pps. a so called specialist neuro. told me to get off my lazy duff and walk...

and yes, i'd say i have it. have finally sent literature searches and reprints to my docs and so they know it too. i lost my job and health insurance and am bummed out.

don't mind me, it's late where i am and i am tired. wish i still had my tee shirt that said 'je suis fatiguee' on it. (please imagine correct accents over the e.

Janet W. 08-01-2006 05:45 PM

Re: What is new with PPS, and do you have it?
So, sorry for any of us polio survivors- it is not easy. Carole I know where you are coming from- I lost my job last year and have gotten worse as time goes on.. I have no health insurance- it is a bummer BUT we are survivors from the past and don't give up...

Look up on google and do a search for Dr. Bruno and post polio syndrome(sp) he is located in NJ and has written a book on the late effects of polio.

Please let me know how you are?


wannadance 08-05-2006 05:37 PM

Re: What is new with PPS, and do you have it?
dear janet,

you are so kind to ask after my welfare...

sometimes, i get these big spurts of total frustration since all the things i really loved to do are things i can't do any more...

i also inherited an eye thing called fuchs' corneal dystrophy and am losing my vision (need transplants), so the thing i love most, reading and learning, is getting more and more difficult, but i am reading like a crazed woman, until i can't read another word...i was like that will ballet and medicine and walking around and making jewelry and inventing new colors of makeup and everything...

um...despite lifelong efforts, i guess i am still type A...ya think???


physically, about the same, a little less pain and instability: this is a 'good' cycle.

how are you?


Janet W. 08-06-2006 07:19 PM

Re: What is new with PPS, and do you have it?

So sorry to hear about your seeing and problems. I do not know if that would be related to PPS or not. But one thing I do know is that every polio survivor I have ever talked to has that same Type A kinda of personality... I think that is what makes them unique.

Yes, I am a polio survivor- I was sure luckier than most- Ihad it in my one leg and did not wear a brace- I wore thes cute special othopedic type shoes built up on the heel.

Anyways, not sure if I have PPS- but I follow alot of the symtoms- depression, anxiety disorders- joint pain, new weakness. The worse I have right now is my darn neck has alot of pain and remains like I got a stiff neck all the time, than I get spasms. That gets me more depressed-but we are survivors and strivors.

Hope you are doing the best you can- plus I notice more and more I get so worn down, I have to take a power rest in the afternoon and I get alot of 'brain fog'.

Best to you

cattieos 08-07-2006 08:21 PM

Re: What is new with PPS, and do you have it?
I talked to a dr today about Remicade for Uc, which I have, and they said that it helped alot with really bad arthiris and joint pains, which alot of polio surviros end up with, that is my dads main problem, she said it really helped them alot.

Margaret Greene 08-28-2006 03:44 PM

Re: What is new with PPS, and do you have it?
Hi to all polio survivors. i was diagnosed with polio in 1957 at the age of 2 and a half years old. Spent most of my childhood in hospital, went through many surgerys, when I was 16 i had had enough and refused to have any more. got myself a job and never looked back. I wore a brace on my left leg most of my life, I got married had six children, and felt great. never a pain or ache for years. then about ten years ago it started, pains in my joints, aching all over, memory lapes. I thought I was going crazy and it was all in my head. went to a lot of doctors before i was diagnosed with pps. I was relieved, [ i was not losing my mind] :confused: now i manage to control it as much as i can by learning not to push myself as much as i used to. I have found that most of the pps suffers i have talked to were guilty of the same thing. all seemed to push themselfs to the limit. May god keep you all pain free. Maggie :wave:

tegir 12-03-2006 07:26 PM

Re: What is new with PPS, and do you have it?
There is no test for PPS. The docs can do an EMG, which tests the nerves to muscles.

When you had polio, according to Dr Bruno (the Post Paradox), up to 98% of the neurons in your body were infected. Likely between 40 and 60% of the motor neurons were impacted. Most recovered, but not fully - where normal neurons connect to 10 or 12 others, people who had polio only have neurons connectiong to 6 or 8 other neurons. Less muscle can be controlled.

As you age, it is normal to lose some neurons to 'old age'. People who had polio may be operating with only 40-60% of their normal muscles being controlled (the others are simply not connected). When some of the neurons die, it is less and less,and the muscles controlled tend to be overworked...

You may be relatively 'normal' in activities for 30-40-50 years, then as you age, suddenly find muscle weakness...or fatigue....

The EMG verfies muscle weakness, but if you were diagnosed and/or hospitalized with polio, likely won't do much but verify that. It does rule out other causes. It can be useful for people who don't know they had polio. Some don't know their medical history. (I don't remember anything about my polio at age 4 - zip - nada....). Of course, with weak right arm, and my parents telling me about the time I was in 'the hospital' for a long time, I know that I had it.

Other than 'lifestyle changes' and not over doing things (which can cause even more problems', there is no cure for PPS.

According to Dr Bruno, half the people who had polio develop Sleep Apnea - which can bring on a whole raft of other problems - heart arrythmias, gastric problems....lots of web info on Sleep Apnea.

Most GP physicians are totally clueless on PPS. You have to educate them.

tegir in Dallas, TX

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