Mary Ann
Forum Replies Created
-
I understand that the problem is with Manesium Sulfate but there are various forms and in one of my supplements is magnesium citrate and when I googled magnesium, it said this is an easier one on the body to absorb….. I had among my supplements a Magnesium with 8 different varieties in it… I stopped taking it, but have not noticed a problem with the other citrate one… Any advice?
-
Like some of the others, I was on cpap w/2 lts oxygen at night….before diagnosed with MG, but I feel I had it long before diagnosed with MG because my shortness of breath which was neither from lungs or heart (say the lung and heart doctors) I appreciate the higher oxygen levels it provides and though it awakens me as pressure goes up, I’m glad to have it!
-
I am also having a “flare up” … and not sure why, but the pyri/pred does not seem to be helping this time. They worked fast the original time, but now my eyes are the continuing worse symptom…. closing eye lids and double vision. I’m hoping the vyvgart infusion will help… It is discouraging. I had done the “no no” of going clear off the Rx and seemed to be improving still, then..whammy…
-
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 that and I’m only on prednisone now at 40 mg a day and after 2 weeks, the neurologist is going to start me on less….. See a neurologist. Be warned on the perscriptions that interact… see the MG page – for that is what caused my ‘FLARE UP”….
-
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. 😉
-
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 still have double vision when tired… also shortness of breath, weakness in picking up things, standing up, neck tired, too tired to talk… etc….. fatigue is big when the Predisone wears off … It seems to last about 5 hours between… so 7-12 and 5 … I’m at 60 mg a day.  I really appreciate hearing your story!!!! I’ve been on for about 2 weeks now.
-
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 is part of this whole picture. I’ll appreciate any help, suggestions you have…
-
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 doctor who isn’t so busy to be able to put the breathing, eyes, heart, etc all together…. and connect the dots with me.  Thanks for any advice.