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Old 10-21-2008, 06:48 PM   #1
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martha03 HB User
Anyone have these symptoms?

I contracted polio in 1951 at the age of 4 and as a result my right arm has been paralyzed ever since. At the time I contracted the disease, my arm was broken and in a cast and the doctors told my parents that was why the paralysis affected my arm. To date I have shown no evidence of PPS but am having some weird changes and wondered if anyone else is experiencing them and if they have been attributed to PPS. I cannot tolerate certain medications, specifically cholesterol statin drugs, meds for the prevention of osteoporosis and most recently I cannot take meds for acid reflux. The symptoms in each case are the same: severe muscle pain and mild weakness. In addition, I have developed dysphonia which is a vocal condition that makes my voice sound strained. I am an otherwise healthy 62 year woman who is physically active and fit. Please let me know if anyone else has had these issues. Thanks.
Martha 03

 
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Old 11-02-2008, 03:49 PM   #2
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adeS HB User
Re: Anyone have these symptoms?

Hi Martha I contracted the dreaded polio in about 1954 in my left arm and leg, from then on it has left my leg wasted but my arm seemed to be ok, but the last few years I have had problems falling over etc.. now statins! I was taking these as part of a colestrol control, I had to stop taking them as they made my ankle joints very painful, my doctor poo pooed the idea but I still dont take the drug anymore, furthermore my polio specialist said not to take them.
Hope this has helped, Good luck to you Ade..

 
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Old 11-15-2008, 04:04 PM   #3
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Janet W. HB User
Re: Anyone have these symptoms?

HI, I do believe taking statins is very difficult of Polio Survivors. You may want to contact Dr. Bruno and ask him some of these questions also- he is an expert when it comes to Polio Survivors.

Good luck
Janet

 
Old 04-05-2009, 04:42 PM   #4
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Rich Willett HB User
Re: Anyone have these symptoms?

I have not had a problem with any of the meds you mention but I am having trouble with my voice. I teach and has become a problem. I get a sore throat that only hurts when I speak. It doesn't hurt when I swallow. I had polio in 1950 at the age of 18 months and if affected my legs, hips, back, and neck. My long term effects were only to my legs but it's apparent that I am starting to experience post-polio symptoms in other areas.

Last edited by mod-anon; 04-05-2009 at 11:20 PM. Reason: Please use the Quick Reply button instead of Quote Reply.

 
Old 04-29-2009, 05:08 PM   #5
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too deep HB User
Thumbs down Re: Anyone have these symptoms?

A friend of mine saw on Bay News 9 a new brace that is electronic for Post-Polios this morning.
Does anyone out there know of this new brace?

<edited>


As far as Dr. Bruno, yes, he is one of the doctors who know a lot about Post-Polio.

Last edited by Administrator; 02-19-2010 at 03:59 AM. Reason: removed disallowed website

 
Old 05-16-2009, 10:45 PM   #6
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Janeberm HB User
Re: Anyone have these symptoms?

Quote:
Originally Posted by martha03 View Post
I contracted polio in 1951 at the age of 4 and as a result my right arm has been paralyzed ever since. At the time I contracted the disease, my arm was broken and in a cast and the doctors told my parents that was why the paralysis affected my arm. To date I have shown no evidence of PPS but am having some weird changes and wondered if anyone else is experiencing them and if they have been attributed to PPS. I cannot tolerate certain medications, specifically cholesterol statin drugs, meds for the prevention of osteoporosis and most recently I cannot take meds for acid reflux. The symptoms in each case are the same: severe muscle pain and mild weakness. In addition, I have developed dysphonia which is a vocal condition that makes my voice sound strained. I am an otherwise healthy 62 year woman who is physically active and fit. Please let me know if anyone else has had these issues. Thanks.
Martha 03
Hi Martha,

I'm the same age as you and I had polio in 1952 at the age of 5. I was left with paralysis mostly in my left leg and spine. I had a spinal fusion in 1959 and developed PPS after my second child was born in 1982.

In recent years I've had problems with both osteoporosis and cholesterol statin drugs. My doctor wanted me to begin taking Fosamax nearly three years ago, but I had severe muscle pain and weakness. I think he thought I was crazy and suggested that I try it again. I did, but only after waiting over 6 months. The same thing happened again, except it developed in about 3 weeks instead of the 5 weeks it took the first time. It was so awful the second time that I could barely move! He then suggested that I try Actonal. I waited over a year and only decided to do so after my gynocologist insisted that it was a different compound and I should try it. I did, and haven't had any problem with that particular drug.

Last fall I was found to have a heart murmer and it was traced to a congenital defect of the aortic valve. It was already at the severe stage when it was discovered and I had to have open heart surgery to have it replaced at the end of February. Luckily I hadn't done any damage to my heart (most likely because I've never been able to do strenious exercise) and my arteries were all clear, but my surgeon put me on Lipitor after the surgery. I was recovering well until about 5 weeks out when I got very sick with extreme muscle weakness and pain. My visiting nurse came to see me and immediately sent me to my doctor. He took me off the medication (I was on it to supposedly keep the new valve clear of plaque, but the jury is still out on that one) and about a week later I was back on the road to recovery.

I didn't make the connection of these reactions to my polio until I read your post and now I see that others are saying the same thing. I also had a very difficult time with the anesthesia. Have you had any experience with that?
I spent a lot of time searching the web trying to find anyone who had polio and then had OHS, to no avail. I'm sure that there must be some folks out there who have had valve replacement or bypass surgery. I'd really like to compare notes since I was pretty much on my own for this surgery and how I was dealt with afterward, since I use crutches to walk and have balance issues. Getting up the day after OHS just wasn't in the books for me.

Thanks for listening, Jane

 
Old 05-17-2009, 09:35 AM   #7
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martha03 HB User
Re: Anyone have these symptoms?

Hi Jane,

I have had no problems with anesthesia to date. Thanks for the tip on Actonel - I will remember that if I ever have to take a drug for osteoporosis. Fortunately my last bone density test showed my bones are fine. But the issue of statin drugs for people who had polio as children is troubling. Does anyone know if there have been any studies done on this issue? Also, can anyone recommend a post polio specialist in the Los Angeles area?

Martha

 
Old 11-05-2009, 04:45 PM   #8
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kanndogirl HB User
Re: Anyone have these symptoms?

I agree, Dr Richard Bruno is astounding, I whole heartedly recommend his book The Polio Paradox, it is a great educational book, and you will likely recognize a lot of things in his book that are affecting you now - I did, and I just thought I was getting old!!! LOL As far as meds, if some of the side effects include muscle weakness, these may be some that you need to stay away from, especially since as PPS'rs our muscles are weakening all the time, faster that everyone else's. The last few years I had noticed that my voice/throat would be strained with very much talking, never attributed it to PPS, but after reading some of the posts in here, I'm thinking differently now.

Our outlook is VERY scary, I chose to just think about what I have today, and do whatever I want, whenever I can (without harming anyone else), while I still can - because I sure don't know how long I'll have it!!! My outlook scares some people, but they aren't in my shoes.

Live, Love and Laugh, every day to the fullest!!
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Nancy N
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Old 11-06-2009, 01:06 PM   #9
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Dodie3736 HB User
Re: Anyone have these symptoms?

hi Nancy... how true... my voice/throat are very strained at times that I actually feel like I have a sore throat... and it last for awhile especially if I don't shut up... I was ($&^%ing) at my husband, he's 83, that he never talks to me or listens when I do talk.. So one day he gave in, lol, and talked and listened... and by the time I was thru letting out my feelings.. (not about him) about how I feel... I could hardly talk...and I think he was gratful for that... We all have to take it one day at a time... whether they be good or not... I sometimes get so angry with myself because I cannot do things that were so easy for me to do in the past... Accepting our limitations, I think, is one of the hardest part of PPS... To all my fellow survivors... HUGS... Dolores

 
Old 12-05-2009, 11:48 AM   #10
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musclepaintx HB User
Re: Anyone have these symptoms?

My name is Kathy. I had polio at age 3 in 1955. I, too, am a "poster child" for drug side effects. I've been taking vicodin for pain on/off since 1992 for various surgeries and now for post polio. I'm now experiencing hi B/P which can be from Vicodin, but also due to weight gain on my part and extreme muscle pain/fatigue (was an OR nurse over 20 yrs). My new Weird symptom is Knots in my muscles. Do you have these??

 
Old 12-06-2009, 06:11 AM   #11
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Janeberm HB User
Re: Anyone have these symptoms?

Quote:
Originally Posted by musclepaintx View Post
My name is Kathy. I had polio at age 3 in 1955. I, too, am a "poster child" for drug side effects. I've been taking vicodin for pain on/off since 1992 for various surgeries and now for post polio. I'm now experiencing hi B/P which can be from Vicodin, but also due to weight gain on my part and extreme muscle pain/fatigue (was an OR nurse over 20 yrs). My new Weird symptom is Knots in my muscles. Do you have these??
Hi Kathy, I've had the same kind of problem recently. I had aortic valve replacement surgery last February and suffered from a great deal of upper back and neck pain for the first few months. My back isn't very good to begin with since I had a spinal fusion at age 12 as a result of my polio. As I became more active following the surgery, my lower back began giving me real problems. I asked my GP if I should see an orthopedist and he suggested that I try massage therapy. I am still doing it and it's helped much more than any medication! Currently I am going 2x a week and the change has been dramatic. You may want to give it a try. Jane

 
Old 02-06-2010, 04:13 AM   #12
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Standstogether HB User
Re: Anyone have these symptoms?

I had polio at age 2. It mostly afected my left leg. I thought that was all it did, but I was wrong. My dr. told me that almost everyone that had poilo also has weak lungs and this will cause sleep problems. There are some drugs that make my legs hurt also. You may have problems you don't know about.

 
Old 02-06-2010, 04:20 AM   #13
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Standstogether HB User
Re: Anyone have these symptoms?

I also get knots in my legs and I developed RLS. I'm going for a sleep study Mon. My Dr. said it is all part of my post polio.

 
Old 02-17-2010, 11:10 AM   #14
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Konnie6 HB User
Re: Anyone have these symptoms?

Quote:
Originally Posted by Standstogether View Post
I had polio at age 2. It mostly afected my left leg. I thought that was all it did, but I was wrong. My dr. told me that almost everyone that had poilo also has weak lungs and this will cause sleep problems. There are some drugs that make my legs hurt also. You may have problems you don't know about.
I also had polio at age 2 it affected my legs primarily but also weakened my stomach muscles. I started with PPS symptoms about 10 years ago and was evaluated and treated at Spaulding Rehabilatation in MA. I was surprised when they found that I also had muscle weakness due to old polio in my shoulders and arms. It made sense to me though as I had been experiencing new weakness in arms. My arms used to be VERY strong for a woman. Of course I overused these muscles as I had my other polio ridden ones over the years. Now I try to follow my treatment advice and conserve whenever possible.

 
Old 02-18-2010, 12:07 PM   #15
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Dodie3736 HB User
Re: Anyone have these symptoms?

Hi Konnie6... I am also having the problems in the arms.. they were the strongest part of me... got me up and down... since I have gone back on crutches, they have gotten very weak... I used to arm wresle (sp) with my teenage sons many years ago...Now I can hardly pick up a pot to cook...God Bless my hubby, he loves to cook... I do try to conserve my strength... but I'm not ready to go into a wheel chair... so I still use the arms to walk.. and get me up and down..painful most of the times..I also have trouble with swallowing and talking... my voice gets harsh,and my throat bothers me when I talk too much... to my hubby's delight.. I don't fight with him any more...lol.. but like I said before... we are survivors... hang tight

 
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