Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I hope some on here will remember me, its been close to a year!
Bottom line is I have been taking care of my other 2 sick children along w/ helping my other 2 for this year gone by. In that process searching for the concrete dx of MG or not. I had received a clinical yes from a neuro & a "mg like syndrome" from my specialist so it was frustrating & confusing- finally i just got sick of taking my Mestinon, seemed ok for a few days, no flares or "whatevers" is what I called them. I had been falling more though & landed in the ER, they tried everywhere to get an IV & my veins were not working w/ them AT ALL, my oxygen @ 89 hard to breath but my hubby & I thought it was my heart issues. The ER docs thought they could keep me but could not get an IV in anywhere, by the way it hurts like crazy when they dig that needle around your jaw, did not think a pic line to my heart since really they don't know what the cause is other than I fell, yes I told them I was being treated for MG but nothing concrete other than the med works wonders for me. So we decide to go home it was probably just my heart. My heart doc thought it was lupus & my veins had seized up as to explain the unsuccessful IV attempts, gave me a steroid rx'd for a week for my heart & any inflammation to get my O2 back up but still no oxygen. Went to my specialist & he said "have you been taking your mestinon?" Well no because why take it w/ no concrete dx!
He said the heart doc's theory was not washing, which myO2 was still down, he then made a statement that will keep from ever stopping my mestinon!!! Basically your diaphragm is slowly weakening. I was in horror that I was heading straight for an MG crisis w/ out really considering that simply because i had no concrete proof. Lesson for me & I hope this may help someone else not go through this... No matter how you feel take your mestinon, mg danger can come fast or slow. Yes its concrete for me now, I am an MG person. Can anybody say denial! Much luv to all :)
Bottom line is I have been taking care of my other 2 sick children along w/ helping my other 2 for this year gone by. In that process searching for the concrete dx of MG or not. I had received a clinical yes from a neuro & a "mg like syndrome" from my specialist so it was frustrating & confusing- finally i just got sick of taking my Mestinon, seemed ok for a few days, no flares or "whatevers" is what I called them. I had been falling more though & landed in the ER, they tried everywhere to get an IV & my veins were not working w/ them AT ALL, my oxygen @ 89 hard to breath but my hubby & I thought it was my heart issues. The ER docs thought they could keep me but could not get an IV in anywhere, by the way it hurts like crazy when they dig that needle around your jaw, did not think a pic line to my heart since really they don't know what the cause is other than I fell, yes I told them I was being treated for MG but nothing concrete other than the med works wonders for me. So we decide to go home it was probably just my heart. My heart doc thought it was lupus & my veins had seized up as to explain the unsuccessful IV attempts, gave me a steroid rx'd for a week for my heart & any inflammation to get my O2 back up but still no oxygen. Went to my specialist & he said "have you been taking your mestinon?" Well no because why take it w/ no concrete dx!
He said the heart doc's theory was not washing, which myO2 was still down, he then made a statement that will keep from ever stopping my mestinon!!! Basically your diaphragm is slowly weakening. I was in horror that I was heading straight for an MG crisis w/ out really considering that simply because i had no concrete proof. Lesson for me & I hope this may help someone else not go through this... No matter how you feel take your mestinon, mg danger can come fast or slow. Yes its concrete for me now, I am an MG person. Can anybody say denial! Much luv to all :)
Denial is such an easy place to hide, but such a dangerous place to be. Reminders like yours are much appreciated.
Hugs,
Annette
As Deb said , reminders are appreciated ..Cj
Take Care.
(Been wondering about you, lately.)
That was a pretty scare siege, huh? Glad you are doing better. I can understand what you said ... why you stopped Mestinon.
It's not easy, sorting all this out.
Best wishes to you! Check in, when you can! - Ross
These are for you & your family XXXXXXXXXXXXXXXXXXXX :)
Love & best, best wishes from
Calmday
Here,kere to all the post!
I get told this is MG, it's not, it is MG but they don't know what kind, it's all in my head, it's MG, I'm fat and lazy, it's MG. Pfft! Mestinon works, and every time it does I'm still surprised by the dramatic relief of symptoms.
You hang in there, and let's stop playing this silly game. It's just too scary and risky to get into breathing trouble!