One Doctor’s Visit Does Not a Comprehensive PPS Evaluation Make
Primary Care Perspective
I frequently get questions via email or phone from polio survivors about a particular problem that they are experiencing. I appreciate a short summary of their history and of the “chief complaint”. Often, they will indicate that they have seen a doctor who did some tests, but did not answer their question(s) in a way they could understand. Without question, I will want more information about the extent of paralysis from the polio, other medical conditions that have developed over their lifetime, and/or exactly what tests were done by other physicians, and the results of those tests.
Wouldn’t it be wonderful if all doctors could make a diagnosis and develop a treatment plan in only one visit? Sometimes that is possible for example when the person has the typical rash of shingles, classic gout involving the big toe or the classic symptoms of uncontrolled diabetes. But other times the symptoms may be vague or they could be caused by one or more than a hundred different diagnoses.
Let me share with you the thought process that I go through when a patient presents with a common but non specific symptom such as a headache. In that first visit, my goals are to determine if the headache is caused by something needing urgent/emergent evaluation and management such as a stroke or a brain tumor. At the same time, I start deciding if a much more common cause is at play such as a sinus infection or a tension (muscle contraction) headache. It is rare that I know exactly what is causing that person’s headache when they leave the office, but I have begun making a list in my head and/or on the chart prioritizing the most likely causes and what I will be looking for if they return for a follow up visit. It’s important to note that many of the symptoms that affect people go away on their own, so many patients may get better and not need any further evaluation.
If the patient comes back because they are not better, then I can ask more questions and start ruling in or ruling out various diagnoses that are on my differential diagnosis of causes of headaches. It is a bit like trying to determine why those strings of Christmas lights won’t light testing each light bulb set, then one by one each light within that string, and sometimes the final step that should have been the first, is it plugged into a working outlet? Just like those Christmas lights, sometimes the answer comes quickly and simply and sometimes it takes lots of time and testing.
A similar thought process happens when you consult a doctor about your post polio concerns especially some of the non specific ones such as fatigue, or a sense that you are weaker than you used to be.
When seeing a doctor for the very first time they cannot know what you used to be able to do, the degree a deformity has changed, or how much strength in a particular muscle you had 5 years ago or even last year. In fact, the criterion for making a diagnosis of PPS is showing worsening from your baseline over time. I cannot, nor can any physician, make a diagnosis of PPS when seeing a person for the first time! We can suspect PPS if it is known that the patient has a history of polio and then put it on our list of “differential diagnoses” to consider as we go forward. Also remember one of the most important criteria for a diagnosis of PPS, is that other likely causes of the symptoms need to be ruled out. That will take at least three or more visits and some testing possibly by other medical professionals neurologist, rehabilitative physician (physiatrists) and physical/occupational/speech therapists.
When I am seeing a person with concerns about late effects of polio or post polio syndrome, I generally schedule 2 hours of time to interview them, do an examination, provide some education, and make some recommendations. Sometimes this is more time than I need and sometimes it is not enough. But if your healthcare provider routinely allows 15 to 20 minutes per patient, it will require four or more visits to equal one of my evaluations.
If you were never formally diagnosed with having had polio, then the process to make a diagnosis of late effects of polio or post polio syndrome is likely going to take longer and require more doctor visits late effects of polio or post polio syndrome is likely going to take longer and require more doctor visits than if you clearly have evidence of previous polio. It probably, at minimum will require at least one electromyogram (EMG) with a Nerve Conduction Study.
An EMG is a test in which the neurologist or physiatrist places small needles into the muscle and around nerves in your arm(s) and/or leg(s) to determine how the nerve and muscle “talk” to each other. There is a classic pattern seen in the nerves and muscles affected by prior polio which shows evidence of chronic denervation (loss of nerve supply to the muscle) and chronic innervation (creation of new nerve connections to the muscle).
Please note:
The EMG can establish/prove that a person had polio affecting certain parts of their body;
Tt does not confirm that the person has PPS!
However, many physicians now in practice have never seen this pattern and thus may not recognize it when they see it.
If the written conclusion on the EMG report says something like results are “ bizarre” or “unusual” or “unexplainable” it would be wise to get another neurologist or physiatrist to look at the tracings obtained and render their opinion.