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


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Old 03-13-2018, 07:38 AM #17
Barbi-girl Barbi-girl is offline
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Join Date: Dec 2017
Posts: 24
5 yr Member
Barbi-girl Barbi-girl is offline
Junior Member
 
Join Date: Dec 2017
Posts: 24
5 yr Member
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Wanted to give you all an update. Everything said and suggested in this thread has come true for me.

I’ve started on monthly IVIG treatments and the slow prednisone taper (current dose is 40mg). In addition, I completed a sleep study last night and the Pulmonologist said the results were moderate to severe for a Myasthenia patient. I stopped breathing, on average about 14 times in an hour. During REM, breathing stopped 57 times. My O2 saturation got down to 77% and this was considered unacceptable. Next step will be another study to fit me with a BiPAP as soon as the Pulmonologist gets approval from my insurance to proceed.

This is all taking so long and I’m not feeling very well yet, but am encouraged by all of you kind people sharing advice and information. Dr. Kaminski is fantastic, so I must also give him credit, along with my local Neuro-Opthamologist who is executing orders and treatments. For anyone looking for a top Neurologist in the DC, VA, MD area, see him!
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ErinBear (03-13-2018), pingpongman (03-13-2018)
 

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