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Old 12-01-2020, 09:44 AM #1
jrlc1244 jrlc1244 is offline
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Default Positive reaction to Mestinon

For the last two years I have all sorts of issues including falling down the stairs twice which was completely unexplained. Also last year I woke up one day and was very numb from head to foot on my left hand side and I could not move my left leg properly. I was assessed for a stroke and they found I had one very minor stroke at some stage although not recent. They also found I had a heart problem called HCM which I think is a separate issue.

I was referred to a neurologist this May who carried out lots of blood tests and found that I was short in all types of immunoglobulin but otherwise nothing else was detected. She therefore thought my symptoms were just down to the stroke and diabetic neuropathy.

Since then I have felt very tired all the time and have had problems with movement. I have had double vision for many years (which the doctors put down to me being a long term Type 1 Diabetic) and that has worsened. I also had serious problems talking, swallowing and breathing. As a result when the neurologist followed up on me she suggested it might be MG.

She therefore did all the normal tests. The EMG was suggestive although not 100% positive for MG because the diabetic neuropathy got in the way. The antibody tests were all negative. Its worth noting that I have not ever been able to see her face to face because of the current restrictions.

She got together with her colleagues and they decided to offer me the chance of trying out Mestinon. I obviously researched it and decided to try despite the side effects and I take some tablets to mitigate them and I am really ok. The results were amazing for the first time in ages I can see properly, move about, and breath, talk and swallow properly. After 3 hours or so I go back the way I was before. My question is - does a positive reaction to Mestinon mean I probably have MG because I still have not been officially diagnosed with it ???

Just as a follow up when I told her of the positive results she had me go for a CT scan of my chest although I don't know the result yet.

I have also had Graves Disease in the past (autoimmune hyperactive Thyroid) if that is relevant.

Any help on this question would be gratefully appreciated.

Thanks
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Old 12-01-2020, 10:13 AM #2
Kitt Kitt is offline
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Welcome jric1244. Someone will be along.
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Old 12-11-2020, 01:00 AM #3
Sculptor44 Sculptor44 is offline
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Default My case Similar

I would be in a nursing home in bed if not for mestinon. Possibly not even alive given how well it has in past years supported my breathing.. MY DIAPHRAGM has paralysis at least on one side. My eyes are terrible. I can tell how fresh my Mestinon is by my vision. It is truly amazing! My neuro since 2008 isnt great especially at observation but she keeps me in mestinon. My Mayo neuro big shot remarked once well you can go off your mestinon and I sneered back if I do that I will be in a bed in a nursing home. She backed down. I dont pass emg either. But historically I have all the highlights.. I was at ER last week cause my body could barely rise from chair or toilet. Have Rails by Toilet. Had this on top of worse breathing for months. Unbelievably I got an ER doc that knew Myasthenia.. If not for him and willingness to give steroids my daughter would be finding nursing home slot for Christmas!

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Old 02-22-2021, 01:02 AM #4
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Quote:
Originally Posted by jrlc1244 View Post
I was referred to a neurologist this May who carried out lots of blood tests and As a result when the The results were amazing for the first time in ages I can see properly, move about, and breath, talk and swallow properly. After 3 hours or so I go back the way I was before. My question is - does a positive reaction to Mestinon mean I probably have MG because I still have not been officially diagnosed with it ???

s

That's the way I was diagnosed for the second time. I went to get a second opinion, and one doctor first thought I had a stroke (right side unable to move/legs/arms). However, I didn't have a stroke.

The second neurologist told me that if I have a positive reaction to Mestinon then I probably do have MG.

Well, it was a miracle drug for me. It doesn't last the whole 8 hours though, sometimes, but I know how to adjust my meds.
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