Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 06-13-2014, 01:55 AM #12
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
Posts: 3,306
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AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Unsure, Those O2 numbers are not normal. A tilt table test would be the only way to determine if you have POTS or some other autonomic issue. HOWEVER, if the cause is not that and you have some sort of circulatory or heart issue, that would not be the first test to have!

A pulmonologist can do an overnight oximetry on you. You take home a monitor and do the test at home. I would highly suggest that you get that done right away!!!

You are not getting good doctoring. You need to be aware of what is going on and get the appropriate treatment(s) soon. This is just crazy.

You can do an in-home test on your BP. Lie down for a few minutes. Take your BP. Then slowly stand up and take your BP. Then take it again a minute later.

Orthostatic hypotension: The systolic number (top) drops 20 or more upon standing.

Orthostatic hypertension: The systolic number rises over 20 upon standing.

Don't do this too much, okay? Once is enough. And track what your pulse does as well.

Mike, So, were you referred to a vascular surgeon?!! Geez, did they even check for a clot, either with blood tests and/or an ultrasound? Have they checked you for antiphospholipid antibody syndrome or any of the other ones? 100% blockage is damn dangerous!!! I'm worried about you. Stay hydrated.

Debbie, I'm glad you got some feedback here. I hope IVIG continues to go well. You might want to start a new thread if you have specific questions about a topic, so that you don't get lost in someone else's thread.

Annie
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