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Neuro Visit


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My daughter saw the neurologist today. Except for her abcess wounds she is doing well with most iof her POTS symptoms. He went over all of her test results, inpaitent and outpatient. He did no big tests just neuo work up exam. He says he wants to repeat her MRI in 2 months to rule out MS but he doesn't think that's it. He ssays she has indications of a nerve disorder and a muscular disorder. When not looking she can't tell if he is raising her toes and fingers or lowering them. She can';t feel vibrations on her legs, feet or hands. Her reflexes on her knees and ankles have come basck after being completly absent for months and her gait is closer to normal. He says she diffently has a blood pressure problem as indicated by the TTT but her halter monitor show supraventricular tachycardia, atrial flutter and some other arythmia that he can't correlate with her standing or laying so he doesn't think she has POTS. His best guess is a rare disorder call periodic paralysis , hyperglecemic type. Anyone familiar with this? We are seeing the cardio doc next week to see if he hasn't any other medicine that can bring her heart rate down to a level where she can do some cardio or at least walk. Just gong up one flight of stairs brings her to 160-170bpm. Norpace didn't work, verapamil and other usual drugs haven't helpec. Any suggestions on that too?

Thanks,

Randi

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Hi Randi, I have periodic paralysis, although I haven't heard of the "hyperglycemic" type. I hope this is okay, but if your neuro thinks this is her problem there is a site, well two, where you can go and see if she fits. (It sounds like hypokalemic to me, where people can be affected for very long periods of time) the sites are, well, I won't put them on here because I'm not sure about the rules at the moment, brain fog, but Please feel free to pm me if you'd like to discuss this further. It's a very rare condition and you are lucky the neuro even had heard of it! Gotta give kudos for that! good luck..morgan

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