Question: People in my post-polio support group say I need to see a “polio doctor.” What is a polio doctor? Do you agree that polio survivors must see a physician with such a designation? Do I need my old medical records?
Answer: There is no official certification for a “polio doctor.” I believe the most common use of this informal designation is for a physician with knowledge, experience and interest in evaluation
and treatment of polio survivors.
Given the most common new disabling medical problems of polio survivors, physicians with expertise in neuromuscular disease management that includes the ability to recognize and treat chronic musculoskeletal pain and respiratory problems are ideal. The specialty background of these physicians is most commonly neurology, physical medicine & rehabilitation (physiatrist), orthopedics, pulmonary and family practice.
I am not of the opinion that every polio survivor must see a polio doctor. If a survivor is experiencing a series of new unexplainable and disabling symptoms and is unable to obtain satisfactory help, then I would encourage him/her to seek evaluation by a polio doctor/post-polio clinic. These physicians most commonly will provide consultation services to your primary care physician and may also provide continuing comprehensive follow-up of post-polio related problems.
Many survivors need a network of medical providers (orthopedist, pulmonologist, orthotist, physiatrist, neurologist, etc.) and may need help with coordination and communication among them. A primary care physician can fill this role, although many polio survivors do this function themselves, because they are sufficiently sophisticated with medical and rehabilitative issues.
There is no “one size fits all” answer to your question. The question is better asked, “Are polio survivors’ medical and rehabilitative needs being met by their current providers?” If not, then
specialist consultations are appropriate. If survivors need a comprehensive evaluation of medical concerns and functional changes, then I think seeing a “polio doctor” is invaluable.
Regarding the question about tracking down your medical records, they might be of interest, but of little real value to your physicians in making treatment decisions. To find an explanation for your muscle pain, seek an evaluation by a physician who familiar with post-polio syndrome, such as a local neurologist or physical medicine & rehabilitation specialist.
He/she should perform an EMG (electromyography) for two good reasons. First, it is the best test to establish that the muscles now having pain do show a pattern of electrical activity compatible with having remote (old) polio involvement; that is, they appear to have lost the typical number of motor nerve cells.
Second, the test will show if the nerve/ muscle cell status is stable or unstable. This fact can guide your physicians and therapists in treating your muscle pain with exercise, including how much exercise and how concerned you or they need to be about over-exercising/overusing these painful muscles.
Post-Polio Health (Vol. 25, No. 3, Summer 2009)