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Post-Polio Health (ISSN 1066-5331)

Vol. 8, No. 4, Fall 1992

Read selected articles from this issue ...

Readers Write; Readers Respond    

Special Feature on Scoliosis, continued    

A Friend Remembered

Survey Results

Readers Write; Readers Respond

The Spring, 1992 issue of Polio Network News (Vol. 8, No. 2) asked the following question: "... a neurosurgeon does not think that the burning in my chest and upper back muscles is due to my polio. He prescribed vigorous muscle exercises. Are other polio people experiencing a burning sensation in muscles?"

Before we share answers from our readers, we would like to explain why we printed the question. We wanted our long-time readers to verify for our new readers that a burning sensation in the muscles
is a common problem and that "vigorous exercise" is not the appropriate treatment.

"I had this sensation when I first contracted polio and during stretching exercises following. I now experience a burning pain periodically in my hip and belly muscles. This seems to be tied to overexertion, but I cannot be sure." Alice E. Sharp, PhD, Texas.

"I was diagnosed with post-polio in 1985 and had at that time a burning in my calf muscles, in fact all of my muscles below my knees and above my ankles. It took about a year for the rest to catch up
and the burning to leave. Now, I only get the burning when I overdo it, and believe me, that is seldom. " Juanita Davis, Florida.

"I have experienced this sensation in my upper back, arms, and legs. It seems to occur when I have overdone in some way ... I do have mitrovalve prolapse that seems to cause the burning sensation
in the left side of my chest. I hope this information will help. I know I could not solve any problems by vigorous exercise." Lydia Sommers, Texas.

"I have the burning in the muscles of my back, shoulders, arms, and my legs from the knees down. Stress and overuse bring it about. Also, lack of use brings on the burning sensation. I was told to do
mild stretching exercises. I tried physical therapy and that enhanced the burning sensation." Rose Brotherton, Ohio.

"I have had the burning since 1980 and believe me if you do vigorous exercise you will pay with a lot more pain." Jean Nation, California.

"I, too, am having this type of burning especially in the midriff area. If I overdue, the burning is almost unbearable. I was on an anti-inflammatory drug and it helped for about a year and a half. My physical therapist recommends exercise, but only five to ten repetitions of each exercise (I do three), two or three times a day. I certainly don't think this person's neurosurgeon has ever dealt with postpolio." Carol Tuttle, Wheeling, West Virginia.

Readers Respond

Scooter Information
Lois D. Jeavons, Millboro, VA.

"The response to my letter asking about personal experiences with three-wheeled vehicles was overwhelming. What a great, supportive bunch of people we polio survivors are! After practicing
denial for 40 years, I now realize what I've been missing. Pretending to be "normal" all these years
has been lonely and frustrating. Avoiding reality, I have missed out on a great many positive

"I am enclosing copies of the letters I received, as well as my analysis of all this information, much of it in great detail and invaluably helpful. The letters came from many different states, but so far, none from the eastern states and none from my home state of Virginia. Interesting!

"The small Amigo (one battery) was recommended by the majority because of its maneuverability for aisles in a dress shop, for example. It would seem that a van with a lift is the easiest way to go, and of course, the most expensive. However, one woman said that her husband had built a lift for their van at a cost of $200 vs. $1,000. Another said that General Motors paid for their lift when they purchased a new van. She recommended discussing this with a car dealer.

"After investigating four different brands, one woman recommended the Super Scout made by
Burke, Inc., in Shawnee Mission, Kansas. It breaks down into four parts each weighing 25 pounds.
She uses this vehicle both inside and outside. One woman was disappointed that her vehicle was not suitable for public transportation (the scooter was too long for the bus lift). For outdoor use, one
woman prefers the Rascal by Electric Mobility, because it is sturdier than others she tried.

"Everyone cautioned about turning off the motor when getting in or out. It is a scooter and it will
scoot! Take inclines at right angles, not head on or you could tip over. Also, everyone agreed that you should read the operating instructions carefully.

"I have come to the conclusion, regardless of what model is chosen, that a lift and a van are essential accompaniments to a three-wheeled vehicle if complete independence is to be achieved. Medicare in Virginia is not willing to pay for any of these additional costs. If they are willing to pay toward a scooter, I would think they should help defray the accompanying expenses.

"In the meantime, I have still not purchased a three-wheeled scooter. Instead, I have purchased
a Rolling Walker distributed by NobleMotion Inc. Because I am able to still walk, my doctor did not
want me to purchase a mechanized vehicle prematurely. Made in Sweden, the walker is like a miniature shopping cart but has brakes and a seat, so that I can rest when I become tired. It is very easy to steer and I can fold it up and put it in the car myself. It helps me with my gardening chores,
shopping malls, and inside transporting of heavy items, as well as giving me additional support -
more so than my cane. I am thrilled with it.

"Thank you one and all for sharing your experiences with me. What a wonderful outreaching
service this newsletter performs. Thanks again."

Additional Resource: For a copy of AARP product report on walkers, send a postcard to: URP, Fulfillment, 601 E Street, NW, Washington, DC 20049. Ask for Stock No. D 14390.

Readers Respond

What's Happening with Research Medications
Roberta Simon, RN, Darien, IL

When I asked the Polio Network News to request that you share results you have had with research
prescriptions being tried for treatment on the late effects of polio, I expected to hear from many of
you regarding the drug Mestinon or pyridostigmine. Much to my surprise that was not used by many
people. My other surprise was that drugs being tried seem to be regional in origin. I knew Mestinon
was first tried at the University of Chicago and its use appears to be most accepted by people being treated by physicians who are in the midwest or were here in the '80s and have since relocated. Another part of the country, chiefly the west coast, appears to be extensively using Eldepryl.

MESTINON was first prescribed by research neurologists from two large universities in the
Chicago area. It was designed for use in myasthenia gravis, a neurological disorder which causes weakness that involves most frequently the cranial and eye muscles. The limbs (extremities), respiratory, and swallowing muscles may also be involved. However, no pain or muscle twitching is present in people with this disorder. Of course, as with any other neurological disorder, the symptoms may be mild or severe enough to be life threatening. The treatment is with large doses of Mestinon, three to nine tablets (180 to 540 mg.) three times each day.

In treating post-polio problems, only 90 to 180 mg. are taken each day. Some individuals with extreme fatigue related to post-polio syndrome (PPS) may be taking more, but this is unusual and not the rule. Mestinon increases neuro transmission across the neuromuscular junction, thereby improving strength. Caution is usually advised when this medication is prescribed. Although some report dramatic improvement of their fatigue, others report mild to serious side effects. The other problem with this medication is that some individuals feel so well that they have difficulty not overusing their muscles.

Some of the side effects experienced with Mestinon are increased mucous which increases saliva tion and nasal mucous. Increased mucous in the intestinal tract may cause diarrhea or intestinal cramping. Twitching of the skeletal muscles (fasciculations) or cramping may also be a side effect. One individual reported respiratory difficulty following the use of 1/2 tablet of this medication and had to be placed in intensive care for a period of time on ventilation assistance. One individual wrote, "this is certainly not a drug to be played with." This person reported that the secretions caused face swelling and sinus congestion which led to difficulty in breathing due to sinus and nasal congestion. Another was given 180 mg. in a timed release tablet all at once and reported severe abdominal cramping which could not be controlled even with a lesser dose. Eventually,
this same individual developed difficulty with the parotid gland which was believed to be caused
by the increased mucous. (The parotid gland is located near the ear and is a salivary gland.)
Several persons reported good to excellent response from Mestinon without difficulty or side effects.

Relief of fatigue and improvement of weakness was reported with an improvement in ability to do
activities of daily living. One individual has taken this medication for an eight-year period without
significant consequence other than improvement of ability to function with improvement of endurance, fatigue, and strength.

PREDNISONE use was reported by a few people but was used primarily to treat health difficulties
other than PPS such as asthma, poison ivy, and allergic reactions. All reported improvement in the
difficulty being treated, but side effects were also reported by all but one individual. The one person
reporting good results stated decreased fatigue, weakness, and increased muscle strength. This
person requested long-term treatment but was denied by her physician because of the serious
long-term effects and side effects. Another individual reported that PPS symptoms improved while
on this therapy, but after discontinuing the drug, function was decreased for a period of one to two
weeks. Prednisone is a steroid and should be used with caution because its long-term effects may be quite serious. The National Institute of Neurological Disorders and Stroke (NINDS) is conducting a study using Prednisone in small doses, but I did not hear from anyone involved in this study to know what good or bad experiences they are having.

B VITAMINS have also been widely discussed. A physician from the Netherlands told me that B
vitamins are widely prescribed in that area for the control of neurological symptoms. Vitamin B6
(Pyridoxine) is reported to have relieved joint pain and the generalized aching and pain which was being experienced by one person. This vitamin is available in meats, cereals, lentils, nuts, bananas,
avocados, and potatoes. A deficiency may cause symptoms in adults of peripheral neuropathy
(numbness or decreased sensation in the arms or legs) and memory difficulties. One type of anemia may also be related to a Vitamin B6 deficiency. Pyridoxine is a constituent of an enzyme concerned with the metabolism of amino acids, the building blocks of protein. Vitiman B deficiency is rare if a healthy diet is eaten each day. Many physicians who treat post-polio difficulties suggest that their patients take a multiple vitamin and eat a well-balanced diet each day. For most of us, that is adequate.

ANALGESICS (pain medication) are being taken on a regular basis by three individuals who responded. This is not advised. Dr. Jacquelin Perry explains this. Pain is your body's way of telling you that something is wrong. In PPS, pain is a symptom that is experienced when your activities are excessive and should be re-evaluated. Your body may be telling you to find a way to rest more frequently, to conserve energy, or perhaps even discontinue some activities. Often a brace will assist in eliminating pain. Contrary to what some believe, analgesics are addictive.

Since PPS is a slowly progressive health difficulty, it is much wiser to modify your lifestyle to eliminate the pain than to medicate yourself. Short-term use is acceptable when suggested by your physician, as long as the medication prescribed does not have muscle relaxant qualities. These drugs may actually exacerbate your symptoms and, with respiratory muscle weakness, may even cause an emergency situation which may be life threatening.

Various non-steroidal, anti-inflammatory drugs (NSAIDS) are being used for control of pain. These
include Motrin, Advil, Naprosyn, Volteran, etc. Gastrointestinal symptoms are the most frequent
side effect from all of these drugs, and most should only be taken with food. Fluid retention may also be a problem, as well as kidney difficulties. These drugs should not be taken lightly as they may cause serious side effects and should be monitored carefully by your physician.

ELDEPRYL, as I previously stated, is a medication that is being used frequently in the western states. Another name for this drug is Deprenyl. The generic name is selegiline hydrochloride and was designed to be used for Parkinson's disease in conjunction with levodopa.

There are many adverse effects to Eldepryl that are possible, including some neurological symptoms, so it is essential that a physician carefully monitor your progress while you are on this medication. The dosage prescribed for PPS is less than the recommended dose used with Parkinson's disease.

One person reported a decrease of muscle pain after a year of treatment, but states no increase in energy was noted. Another individual stated no improvement and discontinued the drug after a few weeks because of gastrointestinal difficulties. A third individual reported increased strength with a
reduction in pain after using this medication for six months. The medication was then discontinued for three months and when a decline in function occurred, it was resumed, and the person is now
experiencing a reduction in pain and increased strength.

A double blind study with this drug is being planned by a physician in the west. A double blind
study is when half the participants are given the drug and half a plain tablet without medication
with the participants not knowing which they are taking. Careful records and follow up are done to
determine the effects on each group. All drugs are tried for efficacy this way by the Food and Drug
Administration before being released to the public for a particular use. This drug is approved only for the treatment of Parkinson's disease, just as Mestinon is only approved for use in myasthenia gravis. Both drugs are considered research medications in the treatment of PPS.

AMANTADINE (Symmetrel) is another medication that has been tried for control of PPS symptoms. This drug was designed to be used for Parkinson's disease and was later found to be
effective in the relief of symptoms and for prevention of influenza A virus infections of the respiratory
tract. In two controlled studies, it has been shown to improve the fatigue of multiple sclerosis.
One physician on the east coast reported studying nine patients who were taking symmetrel. Eight
reported improvement of fatigue, and seven expressed a desire to stay on the drug. It was reported
that some experienced a dramatic improvement in fatigue, while others only a slight improvement.
One person went off the medication for a period of time and when therapy was re-introduced is reported to have again noted a decrease in fatigue.

This medication also has been tried in the Midwest with one person reporting a decrease in fatigue and muscle twitching (fasciculations). Others noted no change in symptoms. The physician who reported this information is also suggesting a double blind study.

ACEYTL-L-CARNITINE (an amino acid) is a medication that is being reported by individuals in
Germany, Italy, and Switzerland for treatment of PPS. A physician from Switzerland reported that his patients reported increased strength, endurance, and less fatigue, enabling them to manage their daily work and free time with less difficulty. Some even reported less pain. He states that only a few individuals reported no effect from the medication.

Aceytl-L-carnitine is reported to have the ability to stimulate nerve cells to produce proteins, new cell membrane, and release acetylcholine. It is a prescription drug in Europe and is marketed in the United States by health food stores in a different form as a nutritional supplement to increase muscle strength. It should be noted that the U.S. drug lacks the acetyl component necessary for effective treatment. FDA approval may be sought after additional data is collected by the pharmaceutical company investigating this drug. If the drug is marketed, it will contain the acetyl component. A study done in Italy with this drug showed maximal exercise intensity could be increased with this medication, but this study was done on healthy individuals without neuromuscular disease.

L-CARNITINE is stated to play an important role in the lipid-related energy production which is important in muscles used for short duration at high intensity exercise, but not with long duration,
low intensity exercise. An increase in L-carnitine is believed to increase reinervation of muscle
fibers and a decrease is found in severe neurogenic a trophy.

It certainly will be interesting to hear more about this drug in the future. Perhaps this is another drug
that would benefit from a double blind study. In discussing its use with the health food store owner
close to me, I was told that individuals who are trying to increase their strength for weight lifting
and marathon running are very interested in this drug.

THEOPHYLLINE is another medication that has been prescribed for a few individuals with respiratory muscle weakness. In some research studies it has been found to strengthen the diaphragm and may allow one to go without ventilation assistance for a period of time and relieve pain in the rib cage area from muscle fatigue of respiratory muscles. Not all pulmonologists subscribe to this treatment, but others feel it is extremely helpful. Although I usually do not mention what I myself have done, I do want to state that I took this drug for five years with excellent results prior to being put on ventilation assistance at night two years ago. I continue to take it at the present time. Prior to using theophylline, I felt like an elephant was sitting on my chest constantly! Believe me, I was thrilled when he went back to the circus!!

Last, but certainly not least, was a letter I received from a person with PPS who has taken gamma
globulin for five weeks with Ergamisol and reports no change in symptoms. Ergamisol boosts the
immune system and is usually used as an adjunct to chemotherapy for cancer patients. A trial of Interferon was planned for this patient in the future.

As you can see, a great variety of medications are being tried for relief of post-polio symptoms, but none has been tested with a double blind study and none has been proven to be effective. For every person who reported relief from a medication, I heard from someone else about an adverse reaction or effect or no change at all in their symptoms. The only way we can sensibly make an informed decision about any of these medications is to learn as much as we can about their actions, reactions, and possible side effects. We should ask about both the long and short-term problems that may occur. The public library has a vast amount of literature on medications, and often your local pharmacist would be willing to discuss these issues with you.

I myself have taken one of these medications for an eight-year period without complication and with good results, but I know others who have tried the same medication with many difficulties and complications. You are the only person who can decide what is right for you, and what risks you are willing to take.

I do hope that the National Institutes of Health (NIH) will approve some money for polio research this year making it possible for more researchers to do studies on some of these medications and
perhaps draw some conclusions on their efficiency for the population of persons affected by the late effects of polio.

Special thanks to ... Burk Jubelt, M.D., SUNY Health Science Center,
Department of Neurology, Syracuse, NY.

Post-Polio Research:
We do not, as yet, have specific information to report on the effort to ask congress to attach a dollar amount onto the request for post-polio research at NIH. Individuals on the National Polio Research Coalition list will receive information as soon as it is available, and we will report to our readers in the next issue.


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