Ask the Expert

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

Dear Dr. Perlman: Six years ago I was experiencing uncontrollable full body and limb jerking. Since that time I have done a survey on our IPPSO bulletin board and found that 33 percent of our then 230 members were all having either daytime or nighttime “twitches” (gentle twitches) or daytime or nighttime full body jerking. This twitching and/or jerking seems to be preceded by fatigue or, for me, palpitation of a trigger point.

I have been on Klonopin for the past 20-plus years to keep this under control. I have to take two pills if I start an episode. I take 4mg of Klonopin each night and as needed during the day. I have noticed that I am much better since getting out of a toxic relationship and losing 60 lbs. I would really appreciate if you could shed more light on this twitching/jerking issue.

-Shari Fiksdal

Dear Shari: There are a variety of involuntary movements that can occur in post-polio, caused by the spontaneous discharge of bundles of skeletal muscle fibers, which are remodeled and unstable from the original polio. Many polio survivors notice fasciculations — small, painless, involuntary muscle contractions (twitching) — visible under the skin. There is also an increased occurrence of restless legs syndrome (RLS), an irresistible urge to move one’s body to stop uncomfortable or odd sensations (burning, itching, or tickling sensation in the muscles). This typically occurs at night, but may occur during the daytime as well. It is best treated with drugs that stimulate dopamine (levodopa/carbidopa or Sinemet, Mirapex, Requip).

Periodic leg movement of sleep (PLMS) is a sleep disorder where the patient moves limbs involuntarily during sleep and has problems related to the movement (typically disturbed sleep and excessive daytime sleepiness). This also responds to dopamine medications.

Finally, myoclonus — brief, involuntary twitching of a muscle or a group of muscles — may be caused by muscle contraction or cessation of muscle contraction and can be severe enough to actually move the limb. This sounds more like what you describe above, causing full body jerking at its worst. It responds well to clonazepam (Klonopin).

Dear Dr. Perlman: I have PPS and at the end of the day I am so stiff and in pain regardless of how much I have done. Of course it is much worse if I have done too much. What causes the stiffness? I find that Celebrex really helps, I just hate to take it all the time. I have noticed that getting into a warm water pool helps to relieve the pain. (By the way, I learned so much from your videos on poliotoday.org. Thank you!)

-Donna Rafferty

Dear Donna: Stiffness and pain after a day of activity can arise from joints, soft tissues attached to joints (ligaments, tendons), or muscles. Stiffness is usually caused by swelling of these structures. Irritation of a joint with arthritic changes or of a ligament, tendon or muscle that has had too much pressure put on it causes release of inflammatory chemicals (e.g. prostaglandins). These chemicals open up small blood vessels that allow fluid to seep out into the joint or soft tissue, making it stiff or swollen. Prostaglandins and other inflammatory chemicals can also trigger pain receptors.

Celebrex, ibuprofen, and other “non-steroidal anti-inflammatories” block the production of prostaglandins and help reverse the stiffness and pain. A warm water soak will open up larger blood vessels, which bring more circulation to wash away the prostaglandins that are already there.

Hello Dr. Perlman: I came across some current research being conducted that was posted on the internet in which people with chronic fatigue syndrome were being tested with vitamin B12 and some drugs. I decided to take the B12 and haven’t looked back since it made such a wonderful difference to my energy levels. I take 2,000 mg a day. It has worked for me, but is there medical facts that show vitamin B12 could increase energy levels in all people with PPS?

-Stella Newall

Dear Stella: There is no specific research in people with PPS with respect to the effects of B12. The research in Chronic Fatigue Syndrome needs further validation. However, individuals taking B12 often report improved energy levels, and B12 has been used for this for over 50 years.

Dear Dr. Perlman: Polio survivors are always in search of healthful ways to encourage wellness. There is no dispute that safe drinking water is essential to good health. Today you have many options such as: tap water filtered within communities, tap water additionally filter through your refrigerator, various types of bottled water available for purchase and a plethora of home water-filtering systems. Many of these home water-filtering systems are on the expensive side and often make claims that their product will greatly improve health. However after investigation, I am not sure there is scientific fact to back those claims.

Can you give us a water rule of thumb as it applies to polio survivors to help us sort out fact from fiction? We would all be appreciative of knowing if one approach works significantly better than another to encourage good PPS health.

-Gladys Swensrud

Dear Gladys: Consumer Reports magazine has done several reviews over the years of safe drinking water. They agree that bottled water needs more supervision as to its source and quality. The House Energy and Commerce Subcommittee on Oversight and Investigations on July 9, 2009, sent letters to 13 bottled water companies requesting documents related to testing of bottled water and lists of names and locations of each company’s water sources. The move followed a July 8 hearing at which federal officials pushed Congress to impose for more stringent safety guidelines for bottle waters (Read: “Is Tap Water Safer Than Bottled?” from the Consumer Reports Safety blog for more details).

In May 2007 there was a thorough discussion of how to decide what pure water approach is best for your home. Read article here>>

Dear Dr. Perlman: Are there any current studies in stem cells being pursued to specifically address PPS?

-Richard

Dear Richard: There are no current studies of the use of stem cells in patients with PPS. There are a number of animal studies of the use of stem cells in amyotrophic lateral sclerosis, or Lou Gehrig’s disease, (to replace spinal cord motor neurons), which will have direct application to PPS.

Dear Dr. Perlman: How can I loose weight when I do not have the use of my right leg. I had an evaluation and was told the poliovirus had affected all the muscles in my body, and exercise was not recommended. I walk with the assistance of a leg brace and crutch. I believe that once my weight drops (30 lbs.), I would get around much better. Any suggestions you can offer I greatly appreciate.

Thank you,

-Tammy Powell

Dear Tammy: Weight loss for any of us depends on some type of regular conditioning exercise and on reducing calories. The least fatiguing way for a polio survivor to exercise is in the pool. There are many published studies that show that polio survivors can exercise safely and gain better strength and endurance with non-fatiguing exercise.

If you have a PPS-related question for Dr. Susan Perlman, please e-mail it to poliotoday@salk.edu or submit it on the discussion forum titled “Ask the Expert” in the Community section of this website.