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!!

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)

I can't say if you have MG or not, or what causes your problem. I agree with you that the diagnosis of "anxiety" is being used too often. (It is quite normal for a person who is not doing well and has no answers to his problem, to be somewhat anxious, but this does not mean that he is suffering from "anxiety" nor that this explains his symptoms).

That being said.

All you respiratory tests are within the normal range.
If you have respiratory muscle weakness you MIP/MEP should be decreased.
Your peak flow should also be effected.

It is possible that all those measurements were done when you were doing well. But, you mention that your peak flow doesn't change when you are not doing well. If you have significant involvement of your respiratory muscles (to the extent that you have noticeable breathing difficulties at rest) you can not create the force required to blow the air out of your lungs fast. (This is simple physics: it doesn't matter if flow is decreased because of increased resistance of the airways or because of decreased force in moving it-the result will be the same).

One thing that you can do, is check the peak flow a few times in a row.
Normally it would not go down significantly.

Thanks for the responses so far!

-- I have used the peak flow meter several times in a row before. At one point I was so upset about feeling like I couldnt breath, I tested some 10-15 times in a row. Each gave virtually the same result right around 600-650 (which sounds like a good thing )

I also have an incentive spirometer, and it seems I can 'breath in' just as good regardless how I am feeling...another good thing!


Could it be assumed that these self-tests (along with the constantly normal pulse ox) are good enough to at least let me know if *something* is going on? Is there any real purpose to do more PFTs or more MIP/MEP tests if the docs are unconcered, and my self testing numbers never flucuate?

After a whole round of docs for the last year, I really can't afford to many more exams and what have you! But I also don't want to be foolish and ignore anything.

Thanks again!

You can always request the antibody test for MG, but if you are in the early stages of it, the test may come back negative. If it comes back positive, you have a definitive Dx; if not, you're going to have to keep paying attention to your symptoms.

Does either one of your eyelids droop? For a lot of people, that's the first indication that there is something wrong. You'll want to compare pictures of your eyes in the morning and later in the evening. Given your age, it may be quite subtle.

The neuropathy is troubling in someone your age - it definitely is not normal to have that.

Trust your instincts; if you KNOW that something is wrong (and you're sure it's not anxiety), then keep looking until you find some answers. Doctors only see you for a short "snapshot" of time - they don't know what you are feeling 24/7.

The hallmark of myasthenia is fatigable muscle weakness. This means that when you use the same muscle group again and again, their contraction is going to be less effective.
From the way you describe it, sounds that at least with regards to your respiratory muscles there is no weakness or fatigue.

And yes, this is a very good thing.

It also doesn't sound like anxiety to me either.

Why was the possibility of MG raised? It seems to me that you are looking under the wrong tree.

Nothing of what you describe so far seems to fit MG.

Could it be some allergic reaction?

I think that writing a journal can be very helpful. It may help you and your physicians find what causes those symptoms and more important a possible management which could help.

Many years ago, during my end of year exams, I developed a horrible rash. I went to see a dermatologist who did some tests and prescribed an ointment and also told me to "relax" as this could be caused by the stress of the exams. I was never stressed by exams to that extent, but still took his advice. In order to relax I took warm baths and used the expensive soap I got as a present from my mother in law. But, with all those efforts and the ointment he gave me, there was no improvement in my condition and it only got worse. The dermatologist shrug his shoulders and just told me I should "relax" more. Until one day, while in the bath (just like Archimedes) it was "Eureka". I realized that my rash always got slightly worse after the relaxing bath I took. It took another thought to realize that I was allergic to this excellent soap. Within days of putting it away my condition resolved.

Many everyday household items contain various chemicals which can elicit an allergic reaction. Possibly without realizing it you are intermittently exposed to something which irritates your respiratory tract. It is possibly relatively mild so not seen in the respiratory tests, but enough to cause you significant discomfort.

This is of course just a guess and I may be completely wrong.

I hope you find what causes your problem soon.