Quote:
Originally Posted by AnnieB3
Did they do an echocardiogram, looking for pulmonary hypertension? That's not the same thing as regular hypertension/high blood pressure.
MG can cause more severe breathing issues if it hasn't been treated yet or not treated sufficiently. Mestinon doesn't seem as though it is enough for you. Have they talked about other treatments such as IVIG?
Also, More of a dose of Mestinon isn't necessarily better. Some people, me included, take Mestinon every three hours, round the clock. Speak to your neurologist about tweaking your dose if you feel it isn't sufficient. The drug only lasts two of the three hours after it's taken.
Do you have any side effects of Mestinon?
You have to be more careful outside! Do you take a phone outside with you? Can you keep to the early morning hours when it's less hot? We are getting into fall, but you still need to be careful, especially now when you don't know how bad your MG could become.
It sounds as though you might need another appointment to discuss more help.
Annie
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Thank u so much Annie for being concerned and so helpful. Yes I had a right heart catch done to check for PH. The doctor who performed test at mayo thought I did have it, but the head Doctor in charge of pulmonology said I did not. I left confused .this was 3 yrs ago. No I have not talked to my nuero about
Ivig. The mesniton use to give me terrible stomach cramps but not so much now. It's been about 4mo since I've been to my nuero. Don't want to sound hopeless bc I'm def not ,but it seems like not to much helps so I've been putting off going back. Oh and yes I go out in the morning but w husband at work I have to also go out in middle of day to check alpaca and horse troughs. I can't wait for cool weather!!!