Can you please tell me about his investigations done? What did his nerve conduction study, muscle biopsy and potassium levels show? How long ago he was diagnosed as periodic paralysis?
The investigations I had mentioned, like neurophysiological studies, muscle biopsy, blood potassium levels during the attack do give the diagnosis almost certainly. Since MS has been ruled out, the other conditions which can mimic the clinical manifestations like chronic inflammatory demylinating polyradiculoneuropathy, hereditary sensory and motor neuropathies, thyroid function abnormalities, myasthenia gravis, Conn syndrome, hyperaldosteronism, should also be ruled out.
The periodic paralysis has usually three-four different varieties of presentation. One of them do have fixed muscle weakness. This muscle weakness usually do not increase after a certain duration. Another variety called as Hypokalemic periodic paralysis, if untreated, fixed proximal weakness is experienced, which may interfere with activities. But in this also, after the treatment is initiated, the muscle weakness does not progress.
I can understand your concerns as a mother. Any progressing muscle weakness has to be addressed and the diagnosis should be revisited. The other diagnosis, I had mentioned above should be looked for and should be ruled out or ruled in. A neurologist and an endocrinologist should work in tandem to get the best care.
Hope this helps.
Please feel free for your follow up questions.
The fixed muscle weakness, if happens, do not progress and it is rare to get so much weakness that there are difficulties in activities of daily living. So quality of the life is more or less preserved but competitive sporting event participation may not be possible. At mayo clinic you need to ask about the other differential diagnosis, investigations needed and if it is periodic paralysis what is the type.
It is pleasure assisting you.
As we discussed, adrenal problems (hyperaldosteronism and Conn syndrome) are to be investigated and should be ruled out. Other possibilities for these clinical manifestation are Myasthenia Gravis, and various neuropathies. The thyroid abnormalities too should be investigated by getting the thyroid function test, thyroglobulin, free T3, free T4 etc.
At this point of time, potassium supplementation is justified. The other medication can only be determined by the further investigations. Choosing Mayo clinic for his further care, is a very good decision.
As I mentioned in my previous post also (the second one), you need to ask the examining doctor about the examination clues, clinical findings, further investigative protocol, for this. If he is diagnosed as periodic paralysis, what type it is, as the prognosis is dependent on the type.
I can understand your concerns for your son. You mentioned initially that MS has been ruled out. The neurologist must have reason for saying that. They must have done evoked potential tests and spinal tap, apart from MRI, to rule this out. Still the signs and symptoms of MS are quite different than periodic paralysis, so clinically also, one can determine the possibility. With your description, it does not look MS with the episodic symptoms.
You are welcome.
Best wishes and kindest regards.