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Old 06-05-2008, 07:24 PM   #1
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CarolynSusan HB User
Feeling Alone & New to Board

Hello everyone! I can't tell you how happy I am to find this site because I have been struggling alone with my disease for over a year. I haven't had very good care with all the neurologists I have seen. They still haven't confirmed a diagnosis - I don't think they know much about neurodegenerative diseases like ALS or PPS. I have felt like I have no doctor which gets very frustrating. I have had to retire early from my job because of this too.

In 1951 both of my parents had polio, and my very closest friend had it too. I was never clinically diagnosed with polio, but my left leg has never been "right" all my life.....poor rotation in the joints, clumsy in sports and dancing, cannot sit cross-legged on the floor like everyone else can, and hip pain. So, I could have very easily had polio but wasn't as sick as my parents and childhood friend. Neurologists say they don't think I have PPS because my reflexes are still pretty strong. Isn't it possible that I am NOT a textbook case? Anyway, my left foot is dropped and doesn't work very well....I can barely wiggle my toes.....so I wear a brace. I have weakness in my left leg and hip, and my right leg is starting to weaken. I use forearm crutches, and just recently bought a scooter because I can't walk very far without getting really fatigued. The worst part is the darn muscle twitches, everywhere, non-stop. I get muscle cramps, especially in the morning, and stiffness. Do these symptoms sound like PPS?

I have only had an MRI and an EMG. The EMG does not confirm ALS, yet the neurologists jump to say they think I have it. I had electrodermal screening and the health practitioner that gave me the test found polio and not ALS. So who do I believe? I have had all my dental mercury amalgams removed, I have changed my diet (all organic), take lots of supplements, amino acids, homeopathics, antioxidants, and am looking into a clinic in Davis, California who offers alternative treatments. I have read Eric Edney's book and have learned a lot about ALS. I have also learned that I have to be my own advocate because doctors have been no help at all. They just say they think I have a fatal disease, that there is no treatment, and send me home with no hope. Well, I am a fighter and will fight all the way!

With all that said, I am hoping that my symptoms are similar to those of you with PPS. I have felt so very alone dealing with all of this. I do have two grown children who have been very supportive, one sister who I don't see very often who doesn't seem to relate very well but still is concerned, and my 84 year old Dad who is wonderful because he remembers what polio was like. My mother ended up in a wheelchair because of polio (she died 3 years ago), but my Dad has recovered pretty well......he walks better than I do. My childhood friend was very disabled from polio, couldn't cope, and ended up taking her own life.

I hope to hear from you and will be very grateful if I do.

Carolyn

 
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Old 06-05-2008, 09:54 PM   #2
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Janet W. HB User
Re: Feeling Alone & New to Board

Ohhh Carolyn, I truly feel for you... You could have very well had Polio and not had the bad affects alot of Polio Survivors had. I only had a mild case supposedly but now do have PPS. Sounds like these doctors do not want to deal with it and to be so cruel. I donot know alot about ALS- but it sounds like it surely can progress faster- people that first were getting PPS they were getting dx'd with A form of ALS which is not so.

I am no doctor but maybe by searching more and someone else here can have more answers- Dr. Bruno is a well known PPS doctor- he wrote the Polio Paradox- maybe contact him and he can lead you in the right direction. My understanding is alot of people that had Polio were never diagonosed and now are having alot of problems- with your leg the way it is surely sounds like you could have had Polio.

I hope this has helped and look forward to having another survivor come aboard. Please feel to ask anything- we are all in this together.
Huge Hugs Janet

 
Old 06-06-2008, 08:58 AM   #3
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ronnie53 HB User
Wink Re: Feeling Alone & New to Board

Hi Carolyn, and welcome. I know what you are saying about doctors not wanting to take a stand and say it was polio. The medical system dose not want to say we all have pps because it's like if they do then they are saying we have failed you all. There are more that 50,000 people in the USA alone who are polio suriviors and now most with pps. All the things you have described that are happening to you are most of what a lot of us are going through. Your not alone anymore we will be here for you, and will help you through this. Keep your chin up and don't let anyone or anything tell you that all of this is not real. Your parents had polio and you could very well have gotten it when they were contageous it could have been just a mild case but polio is polio. Once again welcome and glad you are here. Ronnie

 
Old 06-06-2008, 10:59 AM   #4
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Janet W. HB User
Re: Feeling Alone & New to Board

Hi Ronnie - Hope you are doing well. You said it all so well- the doctors are ashame or should be - because they felt they had it all under control and not knowing about PPS or wanting to know... Not sure how it all falls into place but the advice you gave Carolyn is great.

We have to stick to our guns and let them know we are still here and these problems we are having Are Real.... The last I knew there were 1.6 Million Polio Survivors in North America and I think that number has grown. Ove 80% are now having signs of PPS... I think that we all will have some PPS, so listen to our own bodies- besides it Is Our Body - and only we can know and stick to our guns what we are going through.

Love to all Janet

 
Old 06-06-2008, 12:15 PM   #5
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CarolynSusan HB User
Re: Feeling Alone & New to Board

Janet and Ronnie - you have no idea how wonderful it is to hear from you.....I have tears. It feels good not to feel so alone. If what I have is indeed polio, which in my gut I think I have, I feel blessed that I wasn't real sick with polio as a child, but it sure has hit me hard now. You are all very courageous and I hope your courage rubs off on me. I am honored to talk to all of you.

Do you know if anyone has had any luck at all treating the muscle twitches? I understand there are no meds that help very well. How about supplements/amino acids? I am taking all the neuroprotectant amino acids - N-Acetyl Cysteine, Acetyl L-Carnitine, and I take lithium orotate. I read somewhere that cannabis is effective, but I am not so sure I want to deal with that. If anyone has had good luck with something, please let me know.

Just passing on good information to all ......if any of you still have mercury/amalgam dental fillings it is recommended that they be removed. I had all of mine removed (8) and my insurance covered it. Check out the web for good information about how dangerous they are to keep in your mouth.

You will be in my prayers.

Carolyn

 
Old 06-06-2008, 04:32 PM   #6
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Janet W. HB User
Re: Feeling Alone & New to Board

Carolyn- I am so happy you are aboard- sometimes the sight gets a little slow as to getting back - but don't worry someone will. I think we all just have times we have to chill with this PPS stuff.. I know being on the computer can bother me- I get alot of the muscle spasms- neck and back and sometimes my good leg.

I really do not take anything for twitches- but I have heard some people have- so maybe someone can help with that.

I do take muscle relaxers if the spasms get too bad and now taking pain meds daily. I wear both legs braced but they are the AFO's shorter braces- I was using crutches more but backed off because they were getting to me in my shoulders and neck... I will be going in a PC - parttime, I am ok with that I want to safe what I have left. So whatever you need to help assist you and stay imdependent Do it please...

Well best get off- God Bless and Welcome Janet

 
Old 06-06-2008, 08:14 PM   #7
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CarolynSusan HB User
Re: Feeling Alone & New to Board

Janet - Thanks for the words of encouragement. How long have you had PPS? What meds are you taking for muscle spasms? I hope you are doing OK. I believe in the power of prayer so you will be in mine, along with everyone else with this disease. I just got a new AFO for left leg, but it only goes up just below my knee and doesn't give my knee enough support, so I have been falling. Luckily not hurt, just sore. One fall put me in the ER with a mild concussion.....fell on my driveway head first....black eye. I had fun at work (I was working then, but not now) telling stories about my black eye. I have figured out that I absolutely MUST keep my sense of humor through all of this. Laughter is great medicine. I must admit though, it is hard to put on a smiley face all the time isn't it... My best to you.
Carolyn

 
Old 06-06-2008, 08:22 PM   #8
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CarolynSusan HB User
Re: Feeling Alone & New to Board

Ronnie - I hear what you are saying about doctors......neurologists don't seem to know much do they. What I don't understand is that not one ever asked me about my life style, past exposures to toxins, diet and nutrition, sleep, stress levels, etc. Not one was interested in whole body health. I am stunned. I finally found one neurologist outside of my HMO who was once with two big HMO's himself and left both because he felt that chronically ill patients were not getting the care they needed. So, he started his own clinic in Davis that offers comprehensive care and alternative treatments. I had to fill out a huge questionnaire that covered all aspects of my life and health at my first visit. It's about time I found someone who listens and cares. I will soon be able to see him on a regular basis when my insurance changes. In the meantime he has me taking some amino acids that are neuroprotectants, along with lithium and CoQ10. He has offered chelation therapy since I just had all my mercury dental amalgams out, plus IV glutathione and human growth hormone injections. Does any of this sound familiar to you? I am willing to try anything at this point.

My best to you. I am honored that you wrote to me. You have tremendous courage.
Carolyn

 
Old 06-06-2008, 09:13 PM   #9
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Janet W. HB User
Re: Feeling Alone & New to Board

Hi Carolyn- I am glad you have found some doctor that will listen.. Some people can find a Physiatrist that is good with Muscular.Skeletal- I was not lucky with the one I went to... He did at least honestly tell me I knew more about Polio and PPs than he did- for God Sake Physiatrist became in the medical field mainly do to Polio(believe in the 40's) Anyways, humor makes and keeps us going....

I did not get diagnosed with PPS until last year- but sort of had a feeling that this is what was going on in 2006- although signs begin quite a few years back. Actually I was a with a great bunch of survivors on line that knew I had PPS and since I had no insurance wanted me to get diagnosed... So they helped me alot and still do...

It is so important to get the support, and try and educate ourselves and one another as much as we can.

Hugs to you(Yes, God is Good) Janet

 
Old 06-06-2008, 09:18 PM   #10
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Janet W. HB User
Re: Feeling Alone & New to Board

Oops Carolyn, forgot to tell you I take Flexeril for the spasms- Driving is another thing that brings those spasms on... So my hubby puts Biofreeze on and boy he feels the knots- that also gives me relief- water is another great reliever but can' seem to stay in the shower all day-LOL..

Hugs Janet

 
Old 06-06-2008, 10:08 PM   #11
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crochetqueen HB User
Re: Feeling Alone & New to Board

welcome Carolyn Susan. So glad your aboard and hope this site helps you as much as it has me. Your story is remarkable and like I've told so many other survivors, we are all affected in different degrees with the polio and also with the PPS. I haven't been officially diagnosed with PPS but have a lot of the same problems others who have been told thats what it is. It amazes me survivors who haven't been hit real hard with polio, led pretty normal lives, and now are being slammed with this PPS as bad as the survivors who had a bad case of polio. I had polio at 11 months old, Have had over 20 surgeries from age 3 to 16. Rested long enough to have a remarkable son and daughter and during their raising had another leg surgery to keep from walking on the side of my foot, then almost lost my left foot due to a bone infection that I fought for 4 years and then ended up falling and breaking my kneecap in 2 places and broke my femur bone. Its basically been downhill for the last 20 yrs but proud to say I'm approaching my 60th b'day next month! We do have to keep a sense of humor, Thank God everyday for the blessings of life and keep on fighting for our rights as a dying breed that has way too long been forgotten about. The stories I hear from other survivors and the love and support I get from this great group of strong people helps me so so much. Janet have you not got your PC yet? I've took my nite meds already and getting kinda sleepy so I'll post some more tomorrow. Hope everyone rests good tonite. Love you all, Phyllis

 
Old 06-08-2008, 12:10 PM   #12
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ronnie53 HB User
Cool Re: Feeling Alone & New to Board

Hey Janet, Carolyn, and all: hope everyone is doing ok ( or as well as we can )
Carolyn I also take flexeril it helps but it is no cure. Some days I fell I can climb the tallest mountain other days don't even get out of the house. This is how it is with pps, and all of us have felt the same way one time or another. But I know I can't climb anything, the hardest thing for me is to do nothing, but that is what is required of my body. Even on those days I feel good I know I have to concerve my strenght, when I see other people working, planting, or doing anything I envy them, because I can no longer do the thing I use to do. This time of year our bodies can play tricks on us, were not in as much pain, and we think ok let's do something outside plant something build something all this sounds good, but don't be fooled. We have the will just not the power to do these things. This heat feels good on an old wore out body, but it can also hurt us, not just the heat or the sun, but we have to remember who we are. I know from my own pig headed ways that all this feels good to be out and going again, but with this heat it only helps wear us down. So remember to reserve what strength you have and don't over do it keep cool and God Bless You All: Ronnie

 
Old 06-08-2008, 09:11 PM   #13
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Janet W. HB User
Re: Feeling Alone & New to Board

Hi Ronnie,Phyllis and everyone- Ronnie, I did some planting today- my flowers.. But hubby filled the pots with the soil and peat moss- I sat on my porch and just planted away... I also put 3 tomato plants in pots and planted basil-Bingo my little garden.. Gone are the days of the big garden with all the veggies and lots of plants... But just be get my hands in the dirt somewhat felt good. I did carry one pot cause I thought what the heck- Bingo my back is now back in spasms...

Phyllis, I should find out more on my PC this week- we had to go to a 2nd vvendor so taking little longer- I know everything was handed in to my insurance.

Carolyn, this group is great- so keep asking questions-someone will know... PPS can really change your life- but to keep up we have to change with it... Does not mean we stay on the couch- just finding easier ways to do certain things and some things that we can't find we ask for help...

Hugs to all Janet

 
Old 06-09-2008, 09:08 AM   #14
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CarolynSusan HB User
Re: Feeling Alone & New to Board

Dear Ronnie, Janet, Phyllis,

You are all in my prayers every day. I am so glad I have someone to talk to now. I know what you mean when you say that we have to know our limits. I am learning that the hard way. I try to go to the local pool a few times each week, as long as it is warm, and last week I went on Monday, worked out pretty good (not a good swimmer - just use a belly band and do "polar bear" crawls back and forth and use those floaty weights) and I felt so good I went again the next day. I paid for it on Wednesday and didn't leave the house.

I am going to have to get a stair lift in my house because climbing the stairs is getting harder and harder.....takes me forever to get to the top! I really can't afford it, but sure need to get upstairs to my bedroom! So, I have one company coming today to give me a bid. I am getting used to my scooter, and have been scootering around my neighborhood more and don't feel so self-conscious about it. It breaks into 4 parts, but the parts are heavy for me to lift, so I was going to look into one of those lifts for the back of my car. I understand they are really expensive so I am not sure if I will be able to get one. I worry about not being able to drive because my right leg is getting weaker. I know that there are companies that change out your car to the accelerator and brakes on the steering column....bet that really costs a bundle. I live alone, so I need to look into these things. I need to win the lottery!!

Your planting sounds wonderful.....I am a gardener too, but am finding it very difficult to get around in my garden. But I try anyway, just take it slow so I don't fall. I have always loved to watch things grow. Being out in my garden is always very spiritual for me. I hope it is for all of you too.

My doctor gave me neurontin to see if it will help with twitches, spasms, cramps. I haven't taken it yet because I am kind of afraid to. I am taking no medications because I am really trying to clean up my body, but the twitches, cramps, etc. are often maddening, so I guess I will try it. Have any of you tried neurontin?

Do any of you still have strong reflexes? I have always been hyper-reflexic all my life and still am. It is because of my strong reflexes that the neurologists say I don't have PPS, and I have ALS. They base their diagnosis on this ONE symptom. They disregard any information that I have given them about what happened when I was a child - the fact that both parents and closest childhood friend had polio, that it is VERY likely that I had it too because of my left leg issues all my life, and the fact that I was never clinically diagnosed with polio. Bet lots of folks weren't either! I know lots of PPS patients are misdiagnosed with ALS. Wish doc's knew more about all of this! Very sad that they don't. I wonder why the interest isn't there?

Let me know if you know of anyone with PPS that still have good reflexes.

God Bless all of you.

Warmest Regards,
Carolyn

 
Old 06-10-2008, 02:50 AM   #15
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tazkc1 HB User
Re: Feeling Alone & New to Board

hello Carolyn and welcome aboard too...and hey to ya'll too,ronnie,janet,phyllis...i'm doing ok guys,just not been online lately,but thanx for asking and not forgetting about me ...after being on my feet all day,i can just barely get up once i get home...my good foot hurts just as bad as my bad foot,so then BOTH feet hurt to stand on...bought ANOTHER pair of shoes,and still the same thing,so its just not the shoes,but is my FEET
thats the problem...actually about 4 hours being at work,is when my feet start hurting,so then i have to endure the rest of my shift in pain...i start my vacation monday and am sooo ready,just to have some time of no pain ya know...

Carolyn,you asked about Neurontin,i was prescribed Neurontin for my pain in my leg,so i havent seen a decrease in muscle spasms or twitches...its a pain blocker...i am new to this PPS,and only recently learned about PPS about 4 months ago myself,so i have just been going thru the procession of doctors and tests...went to an orthopedic doctor,he referred me to a Physiatrist,and a Neurologist...i started having lots of pain in my upper leg,my primary care doctor put me on Neurontin,two pills a day, was not even touching the pain..when i saw the Neurologist,she upped that to NINE pills a day,and that has helped a lot with the excrutiating pain...i do still have some slight pain,enough that lets me know its still there...i still work carolyn,i'm a meatcutter and is very strenuous work i do,and the neurologist told me i wont be able to do this work much longer,or i will lose it in my arms and my good leg...but for now,i have to keep working...i also work in a cold environment,and they say the COLD can bring on PPS...i also develop bone growths on the bottom of my foot,due to being on my feet all day walking on concrete,and my foot being so stabilized (had a triple arthrodesis done for the drop foot as a kid)...

well guys i hope you're all doing good...cheryl

 
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