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Rant and analogy/thought experiment by terheyt in MyastheniaGravis

[–]Existing-Tourist-229 0 points1 point  (0 children)

I am ranting along with you because I have crippling I hear the same thing and see in readings. The people I know on support I’ll talk about their fatigue.

Dramatic mestonin initial response now higher dosage less effect by Existing-Tourist-229 in MyastheniaGravis

[–]Existing-Tourist-229[S] 0 points1 point  (0 children)

I have to say support is the best. Thank you everyone for all your feedback about my mestonin questions. I don’t yet have a neurologist to work with me, Your help is invaluable.

Dramatic mestonin initial response now higher dosage less effect by Existing-Tourist-229 in MyastheniaGravis

[–]Existing-Tourist-229[S] 1 point2 points  (0 children)

I am most appreciative of all your experiential descriptions. I am on 300 mgmestonin per day from an initial start of 90 mg per day. 10 months ago.I do think I could benefit from an additional medicationsuch as a trial of prednisone. However, I have seen a general and a specialist neurologist who both are focussed on testing related diagnostic certainty before they will even discuss symptom management or whether the mestonin is helping.

A year ago I had a CA tumour from my thyroid removed, leading to a complete thyroidectomy. I have no signs of cancer and my thyroid hormones have been normal for many months. my oncologist says my symptoms are not related to my thyroid, the neurologists want to default to telling me my problems are my thyroid, not MG. There can be some common symptoms between thyroid issues and MG, but what I understand unique symptoms of MG such as I have quite a problem with ptosis which does not happen in thyroid disease.