Mary Ann

The symptom that caught the MG for me was the ocular connection with droooping eyelids…. but when the doctor started me on Prednisone and the Pyri Rx, my eye lid went back up from geing completely closed down within 48 hurs. The double vision is also less and now almost gone completely. The “pyri” caused tummy upsets, so we have since stopped…[Read more]

Thank you!!! Yes!!!! very helpful indeed.  I am new patient and will start Vyvgart for 4 weeks soon…. also interesting to realize that the double vision was when the mestinon wore off… I’m taking Pyridostigmine.  Is that the same thing??? It really helped the droopy eye lid which was clear closed to open up after about 24 hours.  ..but do st…[Read more]

I find I am too tired to sing….. and my voice is off….. except when I’ve taken the predisone and am feeling “chirpy”… Then I have energy to talk and even sing a bit… 🙂 …. but I wiggle my toes with neuropathy to the music anyway….;)   I sing for my enjoyment. 😉

Thanks for that helpful note since I am new at this… though I’m sure I’ve had it a long time but just had crisis which caught it….  I start the infusion that you are doing now in the next week or so… Vyvgart … What is it supposed to actually do???  What signs should I watch for?   When I’m tired, my double vision hits… now I realize it…[Read more]

What is IVIG???   I’m new and scheduling for infusions.  Is that what you are talking about? What are the infusions supposed to do?  My crisis symptoms are subsiding a bit after 12 days of Rx – but finding things I thought were “old age”, that have worsened during this crisis time, so figure probably a part of MG….  But wish there was one doct…[Read more]