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From: gibelain1/29/16 11:11 AM 
To: All  (1 of 5) 
 1521.1 

Hello, all. I'm glad to find this forum, because I am frustrated and need to vent.
Within the last year, I have been experiencing muscle tightness and fatigue in my leg muscles after only mild exertion, as well as general fatigue. I'm 60 yo, and have had diabetes (insulin-deficient) for almost 20years, though always well controlled. I thought this must be some form of diabetic neuropathy, though neuropathy of motor neurons, esp. throughout the neuron and not just the furthest end, without any significant sensory neuropathy, is almost unheard of. While researching this unusual neuropathy, I remembered my mother telling me how I went through something very similar when I was 3 years old, in 1958.

At that time, I was recovering from a 2-week stay in the hospital, where I had a 107 deg. fever, was limp when brought in, had headaches, etc. A spinal tap was done (which I still vividly remember, one of my most terrifying experiences, at least through the eyes of a 3 year old), which turned out positive - i.e., there were high leukocytes in the spinal fluid. The resident told my parents it was clearly polio. Later that day, our family doctor visited, and told the resident that it couldn't be polio, because I had the polio vaccine. Case closed - on that fact alone, I was officially diagnosed with meningitis. So, I went through life believing I had meningitis, not polio.

However, this recent neuropathy reminded me of what I went through after leaving the hospital. I was showing moderate weakness in my legs, and my mother was instructed to make sure I got plenty of exercise. My mother told how she would take me for daily walks, with my younger sister pushed in a stroller. But, invariably, after walking maybe 50 yards, I would be crying, complaining that my legs hurt and I was too tired to continue on. My mother told how she would have to pick up my sister, put me in the stroller and wheeled me home. This went on for at least 3-4 months. I realized that this was exactly how I was feeling now. So, I began researching if this same weakness could somehow be related to the meningitis I suffered at age 3. It was from this that I learned about post-polio syndrome. It seemed to explain everything I was going through. However, one requirement for PPS is that you must be a survivor of polio. There was no corresponding ailment for meningitis. So my next research issue: Could the resident doctor have been right, that I did have polio, despite having the Salk vaccine?

I was born April 23, 1955 - 11 days after the Salk vaccine was licensed. At that time, the vaccine comprised 2 injections, at 2 and 4 months, which I received. However, though I am not sure when, a third injection was added to the regime, because the 'antibody titer', or level of immunity, was found to drop off more rapidly than expected. I do not believe I received this third injection, which our family doctor in 1958 would not know, since we only became patients with him earlier that year when my family moved to another town. So, that is my first argument that the vaccine could have failed 3 years later.

The second reason is that around 1960 studies were being published that the 'antibody titer', especially for Type 1 serotype of polio (the most virulent), was dropping off to low levels "within several years." Based on these studies, the March of Dimes began re-funding Dr. Sabin's work with an oral vaccine (which had been curtailed in 1957 after the oral vaccine had been perfected, but before necessary field trials). The Sabin vaccine was licensed in 1962, at which time the March of Dimes paid for a program to give a booster dose of the oral Sabin vaccine to all children (I remember this as well). But, the relevant fact here was that the 1960 studies showed that even with 3 Salk vaccine injections, the immunity could wear off after several years. So, even if I had received that third booster shot, the immunity could be wearing off in 1958.

Finally, the last fact was that I had my tonsils removed within the 6 months before I got sick in 1958. In researching this, I found studied showing that prior to the Salk vaccine, children having a tonsillectomy had a 400% to 800% higher risk of contracting polio. But, even more relevant, I found a report, published in the New England Journal of Medicine, Jan. 14, 1971, showing a study of children who had been vaccinated against polio had a significant reduction, or total loss in antibody titer against the Type 1 Polio serotype for 4 to 8 months after a tonsillectomy.

Thus, I was convinced that having the then current polio vaccine in the summer of 1955 was in no way any guarantee that I could not contract polio in 1958.

What irritates me even more is that, also in 1955, the criteria for diagnosing polio was also changed. It subsequently required, for a diagnosis of polio vis-a-vis meningitis, at least 60 days of neuromuscular impairment following the infection. As I said, I had at least 3-4 months impairment, though there was no effort at all to revisit the original diagnosis from when I was admitted to the hospital. So, given that I could have had polio, despite the vaccination in 1955, and that my symptoms are so similar to what I went through after my illness in 1958, I now believe I had polio, that I fully recovered, and that I am now suffering from PPS.

I have discussed this with the physiatrist and neurologist I am seeing regarding the neuropathy in my legs. A neuron conductance test and EMG have confirmed abnormal motor neuron activity, with "evidence of axon loss and regeneration", but "no evidence of residual polio complained of by the patient." I never said "residual polio". It shows me he is totally uninformed of PPS. Likewise, my neurologist has told me he has never seen anyone recover from polio paralysis. However, he's only seen polio patients years after they'd suffered paralysis. All reports I've seen show that any impairment remaining after 6-12 months recovery from a polio infection, is likely thereafter permanent. This neurologist was totally unaware that partial or total recovery from paralytic polio was possible, and thought a patient was permanently paralyzed. Maybe he should talk to Alan Alda, Mia Farrow, Donald Sutherland and Itzhak Perlman.

Both these doctors just chalk it up to diabetic neuropathy. Just took the easy was out. "Diabetes causes neuropathy, I have diabetes, therefor the diabetes caused the neuropathy." A classic example of the "post hoc ergo propter hoc" fallacy

Well, that's my ranting and venting. Any comments are appreciated.

Regards,
Jack

 
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From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host1/29/16 12:23 PM 
To: gibelain  (2 of 5) 
 1521.2 in reply to 1521.1 

Welcome Jack! I'm Sally, and I keep this group open for folks jut like you who are searching for answers and help with the kinds of issues you are dealing with. First, you need to know there were some vaccine related cases of Polio with the Salk Vaccine. See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1383764/ . Also, the Sabin Vaccine does have an "iffy" track record. See http://www.globalvaccines.org/content/polio+vaccine+program/19613 for more info. The Sabin Vaccine is no longer in use in the U.S. because the risk of getting Polio from it was greater than the risk of not having it. It still is in use overseas, however, for a variety of reasons.

I had Spinal-Bulbar Polio in 1953 and was completely paralyzed except for breathing. I eventually "recovered" all but parts of my right arm. I wore an upper body brace with splints for my arms and a collar to hold up my head at discharge and gradually shed them over the next few years. I had a tendon transfer done in 1956 to give me some elbow function in the right arm as I had gross motor function in my hand. My shoulder was fused in 1966 as there was no muscle activity from above my elbow thru my shoulder and nothing but tendons and skin to hold my arm on. I had the first symptoms of PPS in my mid-thirties--mainly the fatigue. At fifty I started using a power chair at work (a large city hospital)) because my legs were getting weaker and I finally accepted that I had to protect my remaining strength. Actually, when I was 35, a Physiatrist who was also a Polio survivor recommended a chair then, but then had to scrape me off the ceiling when I had hysterics.

Because my Profession (Medical Social Work) kept me in a medical setting, I've been luckier than most with medical care. I retired on disability when I hit 52.

This Forum is very quiet these days, as folks have migrated over to Facebook. You might want to check out two Forum there: The Post Polio Coffee house, which is moderated by Dr. Richard Bruno--one of the leading experts in the field and a survivor himself at https://www.facebook.com/groups/PostPolioCoffeeHouse/ . It's a closed group, so I can invite you in, or you can ask at the site and Dr. Bruno will. If you haven't already, read his book, The Polio Paradox--it's been our "bible" for many years now and is available used on Amazon or as an E-book for Kindle. For more info, go to the Harvest Center's Website at http://www.postpolioinfo.com/index.php -I suspect you my have been there already as you mentioned Mia Farrow. The Open group is post polio syndrome at https://www.facebook.com/groups/19604805616/ . You'll need to register with Facebook to join these. While you are very welcome here, and I check it daily, I think you might find a broader base of help from the two I've mentioned.

There are also resources available for finding medical and support help world wide in Post-Polio Health International's Directory at http://www.post-polio.org/net/PDIR.pdf . Dr. Bruno's group has started a "Good Docs" list which can be found under "Files" on the Coffee house site. There are articles on all of the sites that you might find useful. If you need an invite to join e-mail me at sarabowlden@msn.com .

Hope to talk with you soon, either here or on FB.

Sara, errr Sally ;)

  • Edited January 30, 2016 12:44 am  by  Sally (SARABOWLDEN)
 

 
From: mandy101wal10/17/16 4:15 PM 
To: All  (3 of 5) 
 1521.3 in reply to 1521.2 
Hi everyone i'm new to the site just joined and very frustrated with what is going on with my health just now really needed to chat to see if anyone can relate to what iam going through.I was given the Polio vaccination when i was little and at a yr and ten months old i woke up one morning unable to walk was told that i may not walk again as i had got Polio.I was given Penicillin injections for six weeks and out of the blue i started to walk again which was a bit of a miracle.When i was 17yrs old i started to suffer with pain in my right groin and over the yrs i started to suffer from more and more strange neurological symptoms.I was very fit attended my local gym a lot and noticed that my legs where getting weaker and weaker and i had problems with severe constipation which they could never find and answer too.Then 12yrs ago i went paralysed down my right side was taken to hospital as they suspected a stroke i was only 32 after a brain scan revealed no stroke i then seen a neurologist who came up with some silly name for a condition which i have always questioned being the wrong diagnosis.Was also told that my bowels no longer worked so had to get all my large bowel removed.Over the pat few yrs i feel like i have really deteriorated especially this year.Iam having problems with my spine,knees,hip and groin on my rightside my weaker side to the point that iam unable to walk without using Morphine etc.I have been to see a Orthopeadic cons who says he has never seen someone with such bad gait and posture refferred me urgently to Physio and reckons i have muscle wastage may have something going on with my spine as there's not much muscle strength in it.Iam at my wits end now as iam in severe pain waiting on an mri of my spine have recently asked my neurologist if he thinks that i have Post Polio Syndrome he said he could not diagnose me with this as he hasn't came across anyone who has suffered with Polio but if i went to a private Dr i would be diagnosed with it.Can anyone relate to my experience and what iam going through and does this sound like iam suffering from Post Polio Syndrome?.I have done a bit researcghmyself and i tick every box for the symptoms.Thankyou for reading sorry it was a bit long it's a bit of a long story and if anyone can help me just now it would be greatly appreciated.Mandyx
 

 
From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host10/22/16 8:52 PM 
To: mandy101wal unread  (4 of 5) 
 1521.4 in reply to 1521.3 

Hi Mandyx! As you may be able to tell, this forum is very quiet these days. If you read the post before yours you'll see where all the action is. You will find a lot of support and great folks there. Hope to see you there soon.

Sara

  • Edited October 22, 2016 9:05 pm  by  Sally (SARABOWLDEN)
 

 
From: DoriKMay-24 2:58 PM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (5 of 5) 
 1521.5 in reply to 1521.2 
Hi
I did not see any replies to my post...am a new person to all of this...maybe you though I would see your reply to "Jack" so I will move on to facebook as I really need to hear from others about POst Polio Syndrome
Dori
 

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