Ask The Expert

UCLA Neurologist and PPS expert Dr. Susan Perlman answers your questions.

Dear Dr. Perlman,
I had bulbar polio, which left me with paralyzed facial muscles on one side, difficulty swallowing on one side and muscle weakness. Nothing bothered me except the paralyzed muscles until 15 years ago. Now I have the full compliment of symptoms associated with PPS.

I’ve worked physically hard all my life until the past 15 years when it has started to hurt me. I know that stretching warms up the muscles and seems to help overall. Do you recommend taking ibuprofen to avoid “wind-up” pains? How much stretching is really helpful for a 58-year-old? Why do the pains and spasms from over-exertion come a couple days later? Is aerobic exercise as hard on the muscles as weight lifting?

Thank you for your thoughts.

– Gail

Dear Gail,
Polio survivors with symptoms of post polio syndrome are recommended to engage in three types of exercise:

Gentle, non-fatiguing, conditioning/aerobic exercise. Do whatever you can, without causing pain or fatigue that persists for more than a couple of hours. If you have the choice of increasing repetitions or increasing resistance (eg. with your weightlifting question), increase resistance. Both aerobic and weightlifting can be done tolerably and safely, if these limitations are respected.
Gentle stretching before and after exercise, especially good if pain is an issue.
Targeted strengthening, usually prescribed by a physical therapist, to improve weak muscles. Again, reduce reps, increase resistance, as you build the program.

I have heard from a few polio survivors that the overuse pain may not appear for a day or two. Garden-variety sprain and strain pain may also appear in a delayed fashion. In any case, it is a sign to cut back on the amount of exercise or activity you do at one time. Space and pace.

Using ibuprofen to block “wind up pain” (which a lot of people do) may have two downsides: It can block the early signs of overuse, making it more likely that you will overdo. It can also upset your stomach.

Dear Dr. Perlman,
I understand that many survivors don’t generally experience pain, while others often speak of cold “polio feet” or pain associated with joints and age-related concerns. It has become apparent after numerous tests and the opinions of my physiatrist and my neurologist that the significant pain I experience with pressure to the skin, cold, and hot temperatures are attributable to PPS.

I’ve been told that such sensitivity is likely due to the unique damage done when I experienced the virus as a child. Although I haven’t heard many speak of this extreme sensitivity, I read the other day for the first time that one of the symptoms associated with the viral attack is in fact sensitivity to touch.

Could you help me understand this phenomena and the prevalence of survivors experiencing these types of symptoms?

– Bonnie
(Oregon)

Dear Bonnie,
This hypersensitivity phenomenon (which is seen in about 40% of polio survivors whom I have seen) is most likely caused by changes in spinal cord centers. The original polio caused inflammation in the spinal cord and damage to the anterior horn cells/motor neurons. The inflammation appears to have inflamed neighboring areas of the spinal cord as well, which include pathways that control hypersensitivity (sympathetic pathways) and pathways involved with muscle spasm (upper motor neuron pathways). The only pathways that are typically not affected acutely or in post polio are the pathways that control numbness.

Dear Dr. Perlman,
It has been recommended for polios to take L-carnitine for energy replacement. I take two capsules upon getting up in the morning and another two during the day. The first two bottles seemed to work okay, but now it seems to be working in the opposite direction. After I take them, about half-an-hour later, I need to go to bed and have a sleep.
Can you shed some light on what possibly may be going on?

Regards,
– Anna
(Australia)

Dear Anna,
There are a few questions raised by your experience: Are you taking the same brand of carnitine? Sometimes different brands have different additives that you may react to. Has anything else changed in your vitamin or medication regimen that could be causing increased fatigue? Has your sleep changed, become less restful, causing increased fatigue? Are you doing more since you started the carnitine, leading to overdoing and hence increased fatigue?

Getting rebound from carnitine and a paradoxical effect as you have described would be unusual, but you might try taking a one-month holiday from it, then restarting.

Dear Dr. Perlman,
When you hear or read about PPS, it is mostly about arm or leg muscles or breathing muscles. But there are of course other muscles that can be affected, like the pelvic muscles. A few years ago I started having problems with incontinence. After having all the non-surgical treatment possible, I had lots of tests in a specialized pelvic centre. The conclusion is that the muscles (the sphincter) are intact, but it is the nerve stimulation that is not good enough. The theory is that it is caused by the PPS.

Is this a common problem associated with PPS? And is there any research on the relation between PPS and pelvic problems?

Kind regards,
– Els Symons
Chair of the Dutch Polio Support Group
Secretary General of the European Polio Union

Dear Els,
Any muscle connected to an anterior horn cell is at risk to become weak with acute polio or post polio. This would include the muscles of the pelvic floor that control continence. As with any apparent post polio related symptom, other causes have to be ruled out. Once your doctors are confident that there is nothing else going on, the treatment would be the same as for any other “neurogenic” incontinence. Surgery would not be expected to be helpful.
I am not aware of any specific research going on for polio related incontinence.

Dear Dr. Perlman,
For the past three months I have been experiencing advanced GERD, wheezing upon exhaling and after the slightest exertion. This is all new for me. But it has aggravated the myoclunus and is really making me weak in every way.

I am wondering if the description given in the Breathing & Sleep conference about how our muscles can be the partial cause for GERD in PPS patients could be related to this. After a recent CAT scan, my doctor (not a PPS specialist) told me that I have a rare condition called trachealbroncial malaccia, which is causing the difficulties when I exhale.

I know all things are not PPS, but can the weakness in abdominal or esophageal muscles also be the cause of this? I look forward to any insight you can give me into this issue.

Thank you,
– Shari Fiksdal

Dear Shari,
Weakness in the abdominal muscles can increase the risk of developing GERD and can make it worse. GERD itself then irritates and weakens the esophagus, throat, and tracheobronchial areas.

Dear Dr. Perlman,
Is it common for people with PPS to have occasional wrenching of different working muscles? I was turning the key to go in the door and my bicep wrenched, swelled up and turned black and blue. This happened on four different occasions.

– Betty Mondary

Dear Betty,
Are the wrenching problems occurring in your old polio limb(s)? It sounds like the biceps problem occurred due to a weak biceps being torqued too much. Are you taking any blood thinning drugs or vitamins? They could make this problem worse.

Dear Dr. Perlman,
Swallowing problems are now becoming a problem for me, more so in the morning. To try and make this problem less difficult for me to cope with, I have found that eating a high-protein, low-fat shake works quite well for me. This seems to be the best “meal of choice” for me in the morning.
What do you recommend for polio survivors with swallowing problems, including any tests you could recommend?

Thank you!
– Paula Lambert

Dear Paula,
Survivors of bulbar polio or other polio survivors with swallowing problems should have an evaluation by a speech and swallowing therapist, including a modified barium swallow study. The study should be done at the time of day when swallowing problems are worse. The study will show which muscles are not working properly, so proper recommendations can be made.

The polio survivor should also think about whether they are having any breathing or sleep related problems (same muscle groups as swallowing). If so, then pulmonary function studies with maximal inspiratory and expiratory pressures as well as a nocturnal polysomnogram should be considered.

Dear Dr. Perlman
I had polio in 1956 when I was one year old. I’m now on disability with PPS. Over the past two years I have intermittent episodes of dizziness. I have gone to several doctors including a neurologist looking for a reason for these “spells” with no luck as to a diagnosis. Could this be a result of my PPS?

– Bob Lewis

Dear Bob,
Dizziness is uncommon in post-polio, unless it is a complication of severe fatigue or of low blood pressure due to poor muscle tone in the legs. If neck muscles are weak or painful, they may also trigger dizzy sensations.

So, the questions to be answered include: do you have severe fatigue, very weak leg muscles, or neck pain? Do you have a drop in blood pressure when you stand up? Have you been tested for inner ear dysfunction (intermittent dizziness may be related to Meniere’s Disease)? Are you clear of other medical problems (migraine, high blood pressure, diabetes, high cholesterol, or medications), which can cause dizziness?

Dear Dr. Perlman,
The pharmaceutical company Biogen recently announced the development of a drug to help those with demyelinated motor neurons walk better). The drug is called Ampyra.

If post polio’s remaining nerves have a problem with early demyelination, could this be beneficial to watch in the future to help polio survivors? Do you know of any other new drugs or research that may the ability to maintain muscle strength and/or keep their motor neuron ganglia from dying?

Sincerely,
– Barbara Gratzke

Dear Barbara,
The studies of this drug were in spasticity due to upper motor neuron demyelination. In polio/post polio, the upper motor neurons are typically not involved and the lower motor neurons are not demyelinated (they are missing altogether). It is unlikely that ampyra will help PPS. I am not aware of other drugs under development that could be tested in PPS, with the exception of IVIG.

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