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...
Hey, missed you all:)
I had a few infections that had me vomiting early last Sunday & extreme neck & right shoulder pain. Using phenergan I finally got the vomiting stopped but my neck, rt. shoulder pain was intensifying til I was delirious, breathing problems started on our way to the H. All of you can guess what happened there! "she is hyperventilating" "no,no, relax, it's ok, you have MG?, still no,no, we are not real familiar w/ MG but you are not possibly having a MG crisis!" as my fingers stiffen out, my body is shaking, can't hold my neck up & really felt I might die before they really did what needed to be done! My BP was high. They said they phoned my doc in ED, but my doc is unaware of any calls;(
They took me off Mestinon!! Holy cow!! Are you insane, they had been giving it to me.
I'm fighting for dear life,trying to tell the docs what's up & I have no idea what happened in ER but I made it & was there from last Sunday til last night (Fri)! They tried giving me a EMG test after all this. I screamed with pain ... 10 pulses on same nerve, same spot, my hubby thought it was a usual type EKG type test , so he went on in to work(across the street) as they wheeled me to be tested to get my Mestinon ordered incase the test showed MG!!! The most painful test ever, who wouldn't lose movement after that, it was all very bad timing to!! I had to get a scream out saying STOP, no more in the middle of the pain,crying & still battling the original reasons I came to the ER!! God saved me there I know, all the right circumstances were so risky & all at the wrong time!! I love my doc he never said I needed that test, I even asked him should I have any of the usual MG test done. He said if the Mestinon works on you, you have it, me & your family have all seen a vast improvement, you can always have any referral or help you need from me to see any other specialist in any field, but I promise you will typically find your just lining their pockets, & having blood drawn constantly. Love his gift, he keeps it simple & uses his common sense!
After 3+ days of continuing downward, I was able to think a little now & got the nurse to tell me what meds & why they have me on them, then I saw nothing that would interfere w/ my Mestinon so I had my hubby give them to me privately, my infections are still healing, my pain is still very considerable but they released me reluctantly (because I put myself back on the Mestinon & started a turn around & by the next day,geeze)
I have no idea if anyone can follow this but will write about the past month & 1/2 health drama at home! My daughter has made a great rebound & the Mestinon is really helping her, still working on the big picture thou on her & my son. I'm just glad to be alive,home, & can see a rainbow for all 3 of us, they still need mommy's help in their own health mysteries!! Thank you God for saving me!! P.s. my doc is not a doc where our insurance lets us go, actually he left the hospital setting, which he ran for many years, the above is just one out of many as to why!! I was in a rock & a hard spot..... Needed infection control, equipment that only the H has for proper monitoring, pain management but I also really needed my Mestinon. You can demand your meds that your doc prescribes for you but they can also "not really" treat you as they should & would if you aren't doing/agreeing/being "user friendly" with what the H docs on your floor want you to do.
I want to catch up on a lot of post but have not been able to yet, hope everyone is better! XO. MeLisa
I had a few infections that had me vomiting early last Sunday & extreme neck & right shoulder pain. Using phenergan I finally got the vomiting stopped but my neck, rt. shoulder pain was intensifying til I was delirious, breathing problems started on our way to the H. All of you can guess what happened there! "she is hyperventilating" "no,no, relax, it's ok, you have MG?, still no,no, we are not real familiar w/ MG but you are not possibly having a MG crisis!" as my fingers stiffen out, my body is shaking, can't hold my neck up & really felt I might die before they really did what needed to be done! My BP was high. They said they phoned my doc in ED, but my doc is unaware of any calls;(
They took me off Mestinon!! Holy cow!! Are you insane, they had been giving it to me.
I'm fighting for dear life,trying to tell the docs what's up & I have no idea what happened in ER but I made it & was there from last Sunday til last night (Fri)! They tried giving me a EMG test after all this. I screamed with pain ... 10 pulses on same nerve, same spot, my hubby thought it was a usual type EKG type test , so he went on in to work(across the street) as they wheeled me to be tested to get my Mestinon ordered incase the test showed MG!!! The most painful test ever, who wouldn't lose movement after that, it was all very bad timing to!! I had to get a scream out saying STOP, no more in the middle of the pain,crying & still battling the original reasons I came to the ER!! God saved me there I know, all the right circumstances were so risky & all at the wrong time!! I love my doc he never said I needed that test, I even asked him should I have any of the usual MG test done. He said if the Mestinon works on you, you have it, me & your family have all seen a vast improvement, you can always have any referral or help you need from me to see any other specialist in any field, but I promise you will typically find your just lining their pockets, & having blood drawn constantly. Love his gift, he keeps it simple & uses his common sense!
After 3+ days of continuing downward, I was able to think a little now & got the nurse to tell me what meds & why they have me on them, then I saw nothing that would interfere w/ my Mestinon so I had my hubby give them to me privately, my infections are still healing, my pain is still very considerable but they released me reluctantly (because I put myself back on the Mestinon & started a turn around & by the next day,geeze)
I have no idea if anyone can follow this but will write about the past month & 1/2 health drama at home! My daughter has made a great rebound & the Mestinon is really helping her, still working on the big picture thou on her & my son. I'm just glad to be alive,home, & can see a rainbow for all 3 of us, they still need mommy's help in their own health mysteries!! Thank you God for saving me!! P.s. my doc is not a doc where our insurance lets us go, actually he left the hospital setting, which he ran for many years, the above is just one out of many as to why!! I was in a rock & a hard spot..... Needed infection control, equipment that only the H has for proper monitoring, pain management but I also really needed my Mestinon. You can demand your meds that your doc prescribes for you but they can also "not really" treat you as they should & would if you aren't doing/agreeing/being "user friendly" with what the H docs on your floor want you to do.
I want to catch up on a lot of post but have not been able to yet, hope everyone is better! XO. MeLisa
I think we should print out all of these crisis horror stories and carry them as an addition to our medic alert for the ER's, maybe they will understand a bit more!
I hope you feel even better today, MeLisa,
Take Care,
Linda
nanniedean
Dean
nanniedean