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Old 02-23-2001, 06:23 AM   #1
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Location: Port Charlotte, Florida
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Memaa Brown HB User
Question What is new with PPS, and do you have it?

Hello to all my fellow Polio survivors!

We need some diaglog going here!

I know you are out there somewhere! For I am here in Florida. I think we are all around the same general age group, and we all share the same PPS concerns.

So, please give me a reply! If only to introduce yourself. This site should be a vital tool for us as we grow older and some of us battle with PPS.

Let's share information, useful tips, medical facts, and give general support to each other. Let's hear some of your experiences. Best Regards,
__________________
Memaa Brown

 
Old 07-25-2001, 04:55 PM   #2
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johnmichael HB User
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Hello Memaa Brown;
I, too am a PPS person, age 66. PPS started for me about 15 months ago. I'm suprised that there are so few postings with so many of us out there. There are a few docs out there with lots of experience that can help. i am going to Dr. S.Yarnell in San Francisco--many years of experience.

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[This message has been edited by moderator1 (edited 05-04-2003).]

 
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Old 07-16-2003, 11:12 PM   #3
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Hi Memaa,

Forgive me if I sound a bit dumb, I'm new to the forum and I'm not sure if in fact I have pps. I'm a polio survivor and I have some of the symptoms that I've read about. I'm here looking for answers that might indicate if I do or don't.

I'm 57 years old and live in Southern Idaho. I had poio as a young child prior to entering school. I don't have a lot of info on it and I'm not sure how to even research medical records that old.

Thanks for being here, it's good to at least talk to someone that knows what pps is.

 
Old 07-04-2004, 07:50 PM   #4
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dkirk10152 HB User
Re: What is new with PPS, and do you have it?

Hi Memaa Brown:
I have ben reading these postings here on this form, and I find myself in the same position as most of you. I am 57 years old and also had polio at a young age, but I had a twin that didnot. I had problems with my right leg and foot, and had to have a brace. and just recently I have found out that it has effected my kidney too. Which is one big kidney shaped like a horse shoe. Just had surgery on it had to retransplant four veins and fix an anurism. I have had to have three ribs removed on the right side because of breaking and not growing back. Got four on the left side now. Have bent to specialist at Vanderbelt here in Nashville and they canot give me any answers except it's not cancer. Which is Good, and I am grateful, but that doesn't help the fact that the pain is so great sometimes I feel like death would be a relief. Also had to have part of my intestans removed because of a blood quit circulating and they ruptured. Three disk removed from my back. Canot remember any particular event that I could say for sure that caused any of this. So polio has really done a number on me.
By the time the day is over I am useless when I get home from work. Didn't mean to tell all this when I started, but maby it will help someone els know that they are not alone.

 
Old 07-04-2004, 07:52 PM   #5
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Re: What is new with PPS, and do you have it?

Quote:
Originally Posted by dkirk10152
Hi Memaa Brown:
I have ben reading these postings here on this form, and I find myself in the same position as most of you. I am 57 years old and also had polio at a young age, but I had a twin that didnot. I had problems with my right leg and foot, and had to have a brace. and just recently I have found out that it has effected my kidney too. Which is one big kidney shaped like a horse shoe. Just had surgery on it had to retransplant four veins and fix an anurism. I have had to have three ribs removed on the right side because of breaking and not growing back. Got four on the left side now. Have bent to specialist at Vanderbelt here in Nashville and they canot give me any answers except it's not cancer. Which is Good, and I am grateful, but that doesn't help the fact that the pain is so great sometimes I feel like death would be a relief. Also had to have part of my intestans removed because of a blood quit circulating and they ruptured. Three disk removed from my back. Canot remember any particular event that I could say for sure that caused any of this. So polio has really done a number on me.
By the time the day is over I am useless when I get home from work. Didn't mean to tell all this when I started, but maby it will help someone els know that they are not alone.

 
Old 07-11-2004, 04:18 PM   #6
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lpmoon HB User
Re: What is new with PPS, and do you have it?

Hello fellow board members
I was surfing the web on trying to find info on PPS and found this wonderful message board. I hope to find lots of information in the near future here to help me and others who are new to PPS. I had Polioencephelitis in 1961. My Mother could not wake me up on my fifth birthday to open presents, and our family Dr sent us to Pocatello Idaho to St. Anthony's. I only mention the name of the hospital because it no longer exists, so I have had to do some research in where those records are now located. Anyway, back to the beginning, seems like after a spinal tap and some nessecary blood work, they found that I indeed had polio.
Amazing, that for 43 yrs I have been a productive and happy member of society, working at a great job, marrying and producing four lovely children and they in turn have given me six wonderful grand children. About three yrs ago, I had surgery and since that time I have went spiraling downhill. Osteoarthritis in several vertebra in my spine, aches and pains everywhere, muscles twitching in my legs, arms, shoulders, etc.....after walking to my mailbox, fatigue like I have never experienced in my life. My Drs, treating my for the arthritis but looking at me like I'm crazy about all the other stuff. I have an appointment tomorrow with a Neurologist at Duke, which I am confident that he will supply me with some information about what is going on with my body now. I only thought of the PPS because I also have a brother who had Polio and he has PPS. He told me to go have myself checked out for it as it sounded like what he has been going through. What a long long three yrs this has been. I would love to hear from others and how they were diagnosed with PPS. Your info would be greatly appreciated. Thanks again.

 
Old 10-08-2004, 04:19 PM   #7
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dkirk10152 HB User
We have a lot of readers on this thead, But no one wants to poste

I personaly have had to have an operation on my right foot, and now am recovering at home. Will be three months before I can walk on the foot.This is in addition to all of my problems in the thread earlier. So if any of you readers have anything like post poio syndrome. Please feel free to let us know how it has effected you.


DKirk10152

 
Old 11-09-2004, 09:27 PM   #8
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Join Date: Nov 2004
Posts: 1,469
cattieos HB User
Re: What is new with PPS, and do you have it?

I didnt' personally suffer from polio, I am 27, but my dad had polio and now has PPS. He got polio a few weeks after getting the vaccine, he got very sick immediatley after getting the vaccine. It affected his right leg. He was 6 i think when he got sick. He is 54 now and has had the PPS for about 5 years now. My Dad was always very active, building, hiking, gardening, fixing stuff you name it he was doing it. Now there are some days when he is fine, or at least he pretends to be. But it really scares me to see my Dad like this, some days he can barely walk. He tried alot of different types of pain meds, but he has a sensitive stomach and they make him really sick. I really hope that a cure for this or at least some time of help is found soon, i cannot stand to see him like this. I am expecting a baby in June, and i know he is happy but i think he is also worried that he is not going to be able to do the things he wants to for the baby. Anyway, i rambled. I got some info from the daughter of another PPS suffererer that those memory foam matresses really help her dad, and that he also gets accupunture, and that the dr suggested he walk alot.

 
Old 01-06-2005, 12:16 AM   #9
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Frieda HB User
Re: What is new with PPS, and do you have it?

Quote:
Originally Posted by Memaa Brown
Hello to all my fellow Polio survivors!
Hi Memaa Brown,

I too am a pps sufferer and have been for 10 years. I live in Western Australia and belong to a pps group. It is great to get with other sufferes and share. Iam 66yrs of age and had polio in 1948. Best wishes. Frieda
We need some diaglog going here!

I know you are out there somewhere! For I am here in Florida. I think we are all around the same general age group, and we all share the same PPS concerns.

So, please give me a reply! If only to introduce yourself. This site should be a vital tool for us as we grow older and some of us battle with PPS.

Let's share information, useful tips, medical facts, and give general support to each other. Let's hear some of your experiences. Best Regards,

 
Old 01-13-2005, 07:03 PM   #10
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kaym57 HB User
Question Re: What is new with PPS, and do you have it?

Hi All,
I'm new to the board and very concerned that I may have PPS. I did not walk for a year as a very small child. Had been walking almost a year and one morning, woke and screamed in agony if anyone tried to get me to stand or walk. Both my parents are deceased, so I have very few details, I was approx. 2 years old at the time. My mother always said they took me to several doctors but no answers were ever given. She did say I was not injured in any way, and always was a bit upset if I questioned too closely. My mother was of the generation, and was raised, that if you were ill or had a chronic ailment that it made you defective in some way. A very sad way to be taught for sure

Anyhow, I've always had severe muscle spasms, especially in legs, and upper back. Also left hip has always 'locked up' for lack of better description. I had a surgery in 1992 followed by a very serious hospital staph infection. My health has declined continually since then. I was officially diagnosed with fibromyalgia in 2000, but told I'd probably had it for years. My ANA test is positive but further testing is inconclusive. Last year after complaining with my legs constantly my pcp referred me to an orthopedist and I was told "you are a mess from the hips down", my left leg is over an inch and a half shorter than right, both kneecaps are "malformed" and I have severe arthritis. The doctor said I was about "15 years older from hips down." I have told all my doctors about the year of not walking and I do know that in 1959 (when this would've happened, I was born in '57) polio was still common. My orthopedist did make note of the not walking and seem concerned but I've now been passed off to a resident (is a teaching facility, fixed income and all).

So, all my long-winded introduction to ask if any of you have any ideas, suggestions as to where to start looking? Any help will be greatly appreciated!

Last edited by kaym57; 01-13-2005 at 07:06 PM. Reason: to insert smilie

 
Old 01-13-2005, 11:31 PM   #11
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kovena HB User
Re: What is new with PPS, and do you have it?

I have posted a few times and have been down for the past 5 months with a fibro flare or something...the MDs have no idea anymore. But for a week now, I have been falling flat on my face because all of a sudden my left leg and foot gives out and I am down for the count. I am very lucky I have not been alone at the time because there was NO way I could get back up by myself. That is new too...I can usually get my legs to lift me but they are too weak anymore to do it. I am getting concerned but do not know where to turn. I was thinking I should see a Neurologist. Any thoughts on this would be so welcomed as I never know when my leg is going to give away. It simply drops me like a hot rock and I have no sign it will happen. So now I am also very sore from all the falls I have had due to my leg giving out. It confuses me to no end, and scares me too as I cannot get back up by myself and if it happens when I m alone I am in deep trouble. Any comments?
Love, Healing Light and Kind Regards to all of you...kovena/jessy

 
Old 02-09-2005, 10:11 PM   #12
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jackiesusan HB User
Re: What is new with PPS, and do you have it?

Hi, I have just found this page.I'm 58, had polio when I was a baby.Have not been diagnosed with pps,though I'm told it's likely.My question right now is:have any of you ,after having a strep germ, been unable to recover? I've been in the hospital twice since December (sick as early as Thanksgiving),had bunches of tests, incuding heart catherization.Never had heart problems.none showed up.but I shake a lot, and have had sore throat and swollen glands since November.Don't have mono,was tested for lyme disease, don't have that. Today the pps was mentioned.I'm to see a pulmonologist next month.Does it ever stop?I was used to going dancing (with others my age and older) 3 nights a week, and now I haven't been in several weeks.I missed the most work I've ever missed, and am still no better.Any clues out there? Thanks for letting me spout off. (Nights get me thinking more than I should.)

 
Old 04-17-2005, 01:50 AM   #13
JSS JSS is offline
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JSS HB User
Re: What is new with PPS, and do you have it?

Hello to everyone,I just want to introduce myself.
I'm a quadriplegic suffering from the late effects of Polio,or as
Meema Brown referred to it PPS. I'm also in acute cronic pain
and have been prescribed 'pain medicine'. That's enough about
me for now except to say that I like the board allot.:-)

Kindest Regards,

jss

 
Old 04-17-2005, 02:43 AM   #14
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stormer HB User
Re: What is new with PPS, and do you have it?

I was diagnosed with PPS several years ago, but have not seen a doctor since. I've scrounged info from the internet and read Dr. Richard Bruno's books, and experimented to find solutions to problems. I had tremendous leg pains, when I got up in the morning and after a nap. I used Vioxx for the pain and that helped. Then I realized the pain was simply from overdoing. I learned, in my case, pain ALWAYS comes from overexertion, whether physical or emotional. I no longer use medications. I take multiple vitamin and mineral supplements, extra C and E, extra magnesium, calcium, and glucosamine/chondroitin. I'm wanting to preserve what I have not lost. I keep my weight down, and eat a very high-in-protein diet, though balanced with all food groups. I get around my home with a cane, but must use the motorized carts in stores. I had polio at age 6 months, began the PPS slide at age 32, hit "the wall" at age 56, and was diagnosed a few years later. Acceptance has been hard but there's no alternative. There's tons of info on the internet about PPS, ALL of it worth reading and checking out. A forum like this one is one of the bonuses!

 
Old 09-20-2005, 01:20 PM   #15
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tamla HB User
Re: What is new with PPS, and do you have it?

I contracted polio at the age of 2 years of age, approximately. Apparently there was an outbreak here in the UK in the early 1950s (I am now 55 years of age). Having had polio it resulted in muscle wastage in my left arm and upper left torso (and some wastage in my left leg). About 2 years ago I began to experience an inability to lift with my left arm, it would just give way when I atttempted to lift even the most slight of weight. I saw a neurologist who confirmed that I was experiencing what has been loosely termed "post-polio syndrome", although this diagnosis is not generally accepted by the medical profession here in the UK.

All of my life I have fought against the possibility that I would have to suffer what I feel as "being different" until I die but you know what? - the muscle nerve endings have died, they will not come back and no matter how much I exercise I will have to come to terms with my condition. Nonetheless I am desperate for someone to find a way for me to feel and look "normal"

Has anybody been recommended to take a (legal) herbal supplement to aid relief from the syndrome and if so what is it please?

 
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