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-   -   Breathing problems (https://www.neurotalk.org/myasthenia-gravis/255578-breathing.html)

The Chef 06-06-2020 06:49 AM

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 .

JimInMI 06-07-2020 10:22 PM

Chef,
First, try and get a new neurologist that specializes in Myasthenia Gravis. I assume you live in the U.K., so I’m not sure how the NHS works trying to change doctors, but if your tests came back positive for MG and your neurologist won’t help you it is time to find a new doctor. Second, search this site for ‘AnnieB’. She is a nurse with MG and always posted about breathing issues and the tests you should have. Best of luck. Jim

Sculptor44 01-06-2021 11:45 PM

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 can’t 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 doesn’t help. It actually makes my chest go stiff like fighting a wall to talk. Mestinon is amazing for breathing issue! The 60mg pills can’t 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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