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
Get some rest. Enjoy your weekend.
We will all be around for you whenever you need us.
TJ is just recovering from being on 720 mg of Mestinon a day--security blanket indeed.
Some of us have decided that in event of ER, besides all the materials we have listed in our Links Group, we are going to sneak our Mestinon in, in our bras (they don't usually watch you undress) and have it in case of slowness of response as well as the outright malpractice of taking it away when we need it to breathe. (Fellows will have to find some other place to hide it!) they don't usually search your significant other either.
I'm so sorry you have been through this, it seems sometimes that the only way to avoid it is to stay out of the hospital. Debra and Barbara can share horror stories with you. Even in this you are not alone.
Get your rest and catch up later.
hugs--not where it hurts--b.
Hee Hee...I don't know about just recovering, but I was on even more than that at one point.
Wow.
HUGS, and take care.
Jeannie
I pray you get to feeling better each day. and oh yes mestinon will be coming with me.
hugs
Annette
Thank goodness I had my mestinon in my purse when I had my thymectomy. The nurses seem to like giving our pills all at once and don't seem to know what the hubub is about with us needing our mestinon and needing it now! (Especially when it is a pill that it based on symptoms, not necessarily time)
Take care and rest.
hugs
sherry
Calling MGFA or MDA or even handing the information to the hospital patient advocate to read once you are stabilized would be the best thing to do, if you can't get your neurologist there to make an impression. You need someone who isn't sick who has credentials and clout to fight that battle.
Someone who was having their medications taken away in the hospital because they were serum negative and their neurologist was out of town managed to get in touch with the closest MGFA office and they sent a representative to the hospital with a sheaf of articles and an attitude, which along with a call from her well respected neurologist was educational. At least she got her meds back.
Another approach is to go to the hospital where you might be admitted and ask to talk to staff about MG. The rescue squads might be receptive also. I think that is what becca has done. Having enough time to alert your neurologist so preparations for your problems can be in place before rescue arrives or you reach the ER may ease your way. And of course, the best thing to do is have your MG under control so you never have to go there, but that is not always possible.
June is MG awareness Month. Maybe there should be an MG walk to your hospital! Drape the ER doors in black crepe (no . . . but thinking about it is cathartic). With two members in your family, you might really want to come up with some ideas for education. Also do be sure to go to the Links page and have that information available especially the ER stuff. b.
I will sure be praying for you and your family. Remember, your friends are not far away by inet, and ready to help in any way we can.
BIG hugs and love being sent your way.
Olliepop
nanniedean
To heck with those who insist you play by their rules; demand what we need, when we need it. Hmmm, a hollowed out cell phone to hold our meds....no one would ever take a phone away from someone!
Larissa
I am wrting here after very long time and my wishes are always with you. Mestinone is very important for MG. How any doctor can stop it? MG patients should use it in all all the conditions that has to do anything muscles to avoid crisis. I am not on mestinon for long time but takes it if my cold stays for more than 3 days.
Another thing I came to know that you and your 2 kids have MG. It is really unusual because this disease is not genetical. Thats what literature and study shows.
I will wish for your good health.
Sudhish