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


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Old 06-06-2020, 06:49 AM #1
The Chef The Chef is offline
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Join Date: Feb 2020
Location: West Midlands
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The Chef The Chef is offline
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Default Breathing problems

Hello everyone
I'm Desperate for some help I have been diagnosed with possible Myasthenia Gravis but my Neuro will not confirm this even as my tests have come back saying it's Myasthenia Gravis .
I'm having breathing problems I seem to get out of breath very quickly even when not doing anything my doctors have put me forward for a breathing test but can not get anything until next year .
I feel so very tired all the time no matter how much sleep I have I wake up still feeling very tired I also suffer from dizziness but can not get the help I need from anywhere .
I have tried my doctors but a complete waste of time .
Can at one please help .
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Old 06-07-2020, 10:22 PM #2
JimInMI JimInMI is offline
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Default

Chef,
First, try and get a new neurologist that specializes in Myasthenia Gravis. I assume you live in the U.K., so Iím not sure how the NHS works trying to change doctors, but if your tests came back positive for MG and your neurologist wonít help you it is time to find a new doctor. Second, search this site for ĎAnnieBí. She is a nurse with MG and always posted about breathing issues and the tests you should have. Best of luck. Jim
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Old 01-06-2021, 11:45 PM #3
Sculptor44 Sculptor44 is offline
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Default How are you doing?

Breathing issues in MG are extremely hard to get help with. I saw a great pulmonologist at Mayo Clinic Minnesota and boy I need him now but being in Iowa I canít go there right now. When I get 125 units Solumedrol it has been amazing help with breathing.
. Now I am having a new quality in chest that steroids even can only help modestly. I struggle to explain it which doesnít help. It actually makes my chest go stiff like fighting a wall to talk. Mestinon is amazing for breathing issue! The 60mg pills canít help fairly fast. Yes I agree a new neuro is a good idea. My state is short on good neuros. I desperately need one!! Sculptor44
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