Please share your story of how you were diagnosed with PPS and what treatments you are undergoing.

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Had a great interview with Dr. Perlman of UCLA who addressed these and many other important PPS-related questions. Check out the video section on PolioToday.org and let us know what you think....
Isn't Dr. Silver amazing.
I quit my job managing a large lawfirm in 1993. I thought I was just tired, would take a couple of months off and then go back to work. After several months, I found that I did not have the energy to go back to work. My primary care physician, after he found out I was a polio survivor, sent me to Dr. Perry at Rancho Los Amigos. Dr. Perry evaluated me and referred me to Dr. Perlman at U.C.L.A. because of my unusual amount of cramping all over my body. Dr. Perlman did EMG, blood tests, MRI, biopsies and finally diagnosed me with PPS in early 1994.
Around 1992 I went to my doctor and asked her was it possible for me to have polio again. She diagnosed multiple sclerosis and gave me a booklet about it. Although many of the MS symptoms fitted mine, a few did not. The doctor continued to search the Internet and ask other doctors she knew for information about my symptoms, and eventually handed me a booklet on PPS asking me if the symptoms matched better than MS. Of course the match was perfect.
There is no treatment that I'm aware of in Australia where I live for PPS. Prayerful meditation helped a great deal, so did a chiropractor who who after tapping my hips knees and ankles with a rubber mallet asked me to walk around for ten minutes, I replied that I couldn't, but eventualy tried and found to my amazement that I now could walk. Polio cramps had dislocated all of these joints, and the slight tap had knocked them back into place. With continued meditation and chiropractic help I was able to keep on my feet. In 2002 I was diagnosed with cancer with five years at the most optimistic to live. This was followed by several more cancers; I refused chemotherapy and radiation, but was losing this battle until I found the herb that boosts the immune system so much that the body can get rid of cancers itself. However, the cancers which were my priority damaged my polio body to the extent that I have to use a wheelchair and can no longer walk. I was a high school teacher until the first cancer made me too ill to work.
Hi Stella, could you tell me the name of the herb you took that boosts the immune system so much that the body rid itself of your cancers. I'm always interested in healing naturally! Thanks, Cheryl
Hello Cheryl, sorry to take so long in replying, I've had no Internet. The herb is Herb Robert and you can read about it's wonderful immune boosting properties on the Australian site herbsarespecial. It was a godsend to me...advanced cancer is very nasty.
PS. This is a borrowed computer, fortunatly the site let me in.

Stella
Thank you Stella for your reply, I am interested in learning about herbs like this, hope you are doing better. Thank you, Cheryl
I self diagnosed PPS in 1984 from an article in Newsweek about polio survivors facing new problems. I had all the symptoms of fatigue, problems walking in cold weather and muscle weakness. I attended my first post-polio support group in a town 100 miles away and finally met other people with the same problems. Later I was a charter member of the Wichita PPS Support Group. I have gone from walking and travelling extensively to being in a power chair full time. I have a great primary care doctor that helps me through all the transitions and he helped me get Social Security disability in 1994. The only treatment at this time is using micro-current therapy for pain management.

Elva
I was in the research studies done in 1984 by Dr. David Weichers, Columbus, OH, and Dr. Lauro Halstead.
I heard about PPS in the early 80's and thought, "Oh...I'll never get it!" Then, my mom died after Alzheimer's, I had a couple spells with my back and was having problems going up and down stairs. I started doing some research on the net after my doctor didn't come up with any leads [ie blood tests for RA, Lupus and other degenerative conditions]. He's open to my investigations but I don't think he can make the diagnosis without more tests.

I then read Richard Bruno's book. And, started realizing that my condition was NOT going to get better by MORE exercise...in fact, it seemed to be making it worse. We don't have medical insurance [and as it is it would probably be a preexisting condition.] And, we live near Pensacola without much in the way of support or physical therapy. I've been thinking about water exercises but they say you have to stay warm. I don't use any assistive devices YET, but I'm thinking it would be good to carry a cane since people would be less likely to run me down which happens now in crowded environments because of my difficulty walking.

We are saving up for an evaluation but in the mean time I've joined this online group hoping to find out where I can go from here. I'm fairly new to all this, but I'm gaining weight [because of no exercise I believe...and EATING] and having more pain, mostly in my arms and shoulders. I am losing muscle mass and I know that can't be good.

ANY suggestions would be wonderful. Thank you for your community.

Any suggestions?? I will also post this on the groups and see if there are any further suggestions.
In 1985 I was in a minor auto accident. I had been feeling tired, couldn't sleep and had just had a phsyical ithe week before in whch the doctor told me I was fine. Well immediately after the wreck I was asked to wak down to a police car, my legs were too shaky to make it. I thought it was stress. I got the 3 blocks back home and as I was walking into my apt. I collapased, a couple found me and brought into the house. That was the beginning of a year of only 3 to 10 steps at a time. I eventually got stronger and after a year of harrasment by a group of D.O.'s. Got back to my home in CA and to my former family doctor and was fianally given the DX of Chronic Fatigue Syndrome. Well I helped them battle the legislature for about 6 years, until I just couldn't walk like the rest of them did. I was finally DX'd with PPS and told to get on a scooter now! Dr. Peterson in Incline Village NV was my treating doctor by then and he told me I did not have CFS (he had reported CFS to the CDC in 1984). He promised me he would not put me on a shelf with an unknown lable, he would figure out what was wrong with me. He met Dr. Bruno at a CFS/PPS conference and they discussed my case. I was told I had PPS, that was about 1994.
Since then I have been to Dr. Cupler who worked at the NINDS in the polio dept. and he has told me I have more arthritic problems than PPS. I have about given up, NO one can tell me why I have muscle jerking and twitching and an undiagnosed Central Nervous System Disorder!
I know pace myself, need lots of rest, can't walk more than about a block unless it is a very good day. I can walk around the house (wall walk) or use my walker or the store cart for distance. I still have my wheel chair as I am afraid that I might one day need it again.
Now I concetrate on the spiritual aspects of my life. I have quit concentrating on my own negatives and look to the postivies. I do meditate and use all the alternative therapies I find. Massage is one of my favorites.

I also founded the International Post Polio Support Organization ten years ago and focus more on helping others. I find that when someone just finds out they have PPS they really need our help and support. It can be found on the Internet at http://ippso-world.org
Shari, You will find help for arthritas on the Western Australian post polio site. I had arthritas at fifteen, finally cured by reading the information at wa post polio. Cheryl has posted the email address on the right of the screen, I think .au should be after the .com though, the US seems the only country that doesnt have an id after com
Thank you for IPPSO, I think I've talked to you there,
Stella

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