Quote:
Originally Posted by michguy88
Okay, so I know for a fact that you can not get diagnosed on the net...so I am not looking for that. But I did want to talk to some folks online who are dealing with MG and get their opinions.
Heres whats going on...I'll try to keep it brief.
Male
Age: 24
I have been worried about MG for a little over a year now. My main symptoms include major shortness of breath (hard to inhale) and feelings like a can't swallow (though I havent actually choked/aspirated on anything).
My shortness of breath will come on randomly throughout the day, and is completely independent of what I am doing. It does sometimes seem to be worse when I exercising, but it is just as likely to hit me when I am watching TV or driving.
I seen a lung doctor last year who did a PFT and MIP/MEP test. The FVC was in the 70% area my RV was above 100% which made me worried about a restrictive disease...but doc was unconcerned. My TLC was normal. My MIP was -96 and MEP was 102.
They diagnosed me as having 'vocal chord dysfunction', but no lung issues. I also have seen a neurologist who did an emg of my legs, and said I have a peripherial neuropathy, but no disease course behind it.
Because of my age, the doctors refuse to do any more tests, because they assume it is all in anxiety related.
I do have a pulse ox and peak flow meter, and even when I am at my 'worst' my OxSat is at 99% and on my peakflow meter I average anywhere from 600-700 (the same as when I feel fine).
My main question, is if this was MG, would my pulse ox and peakflow meter numbers drop for sure if it was respiratory muscles? If it was just my diaphragm that as affected, would that affect my peak flow numbers?
I have read too many stories of folks who were ignored as having anxiety, and they end of having MG or something else similiar.
Whats the juries opinion?
Thank for your time!!
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I am newly diagnosed and just learning about this but i would suggest that you keep a written journal documenting symptoms. after years of complaints about symptons which were dismissed by many doctors as either in my head, being no big deal I think I should have gone with my intuition which was telling me something very serious was wrong.
Unfortunately I think it is just like when someone accepts cheating partner lies explaining away strange behavior they know seems weird, sometimes we really don't want to know we have something very serious so it is all too easy to believe the dismissive doctors. I think you make yourself journal and then give it to the doctor so doctor must acknowledge what you are complaining about.
I don't even think dizziness is really discussed in relation to MG but I can't tell how many times over the last 5 years I told doctors about serious dizziness when I squatted down and all of them said, everyone gets that. I knew it wasnt normal, especially wasn't normal for me but I accepted their explanation and instead modified behavior to prevent...didn't squat, would balance myself as needed. The dizziness is dramatically improved with MG med so I am assuming it is related (but I am keeping a journal and will be reviewing all my notes with my doctor at my next appointment)