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  • I have done many tests (FVC, MIP,MEP, EMG,MRI, Blood tests,.....)
    Everything is normal
    FVC: 130%
    MIP: 160% (- 180)
    MEP: 160% (+ 300)
    My story is very atypical and complicated like you.

    Rémy
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    stuffyearsago
    My FVC a little lower now that MIP/MEP down to 42/44. Having symptoms many years ago is unusual and makes doctors and others in this forum not believe us.
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    stuffyearsago
    It's even more unusual to have such a long asymptomatic period like I did - 12 years of no symptoms.
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    stuffyearsago
    I think what makes me so unusual is the autonomic dysfunction. I think autonomic problems are also involved in my breathing. I have also had these horrible blood pressure and heart rate spikes, which also must be autonomic. They are often dismissed as anxiety, but it's not that at all. I am 54 years old and have had anxiety in my lifetime - my body reacts totally differently to anxiety.
    Hi
    I'm Remy, I M 38 and I live in France, I read your story and I've got the same problems as you.
    Beginning of problems in 2005 (balance problems /Sensation to have drunk) with long asymptomatic periods, then since the end of 2015... again, but this time it is permanent and it progress (respiratory problem, muscular fatigue, loss of endurance, cramps, Fasciculations, swallowing difficulty...)
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    stuffyearsago
    Yes, for me, it started 1994 - 2006, off and on in that period and nowhere near as bad as it is now. From 2006 - 2019, no symptoms. Now, I see muscle wasting in various places. But worse is this breathing problem. I think it is impacting my autonomic breathing. This is why I feel so short of breath sometimes even when it show 100% O2 on the oximeter. Have you tried steroids? Maybe autoimmune subtype.
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    stuffyearsago
    I am going to see the neurologist tomorrow and beg for steroids or IVIG or something to try as years ago, I never had anything even remotely this bad.
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