NeuroTalk Support Groups - Dx by mistake

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Dx by mistake - what's next (https://www.neurotalk.org/myasthenia-gravis/160511-dx-mistake-whats.html)

One thing I have come across. My nearest hospital is not able to handle a MG crisis. I have to travel 25 miles to get IVIG treatments but the hospital 3 minutes can't give that treatment. I suggest you check now to find out who can handle any problem you might have with MG.
Mike

Quote:

Originally Posted by pingpongman (Post 823732)

Good point to consider. BTW - does any one wear a med alert? I use to wear one for med allergies (which after all the reading I've been doing may actually not be allergies! -:eek:

Quote:

Originally Posted by Stellatum (Post 823642)

Great! The fact that you're his first MGer also explains his excitement when you responded to the Tensilon test just like the textbook says you're supposed to do.

I'm glad you got the Mestinon prescription. Here's some things to know. First of all, if it bothers your stomach, take with food. It bothers some people's stomachs, but not others'.

Mestinon has a really short half-life. After about four hours, about half of it has already left your body. So if you find that it works, but only for a few hours, typically the neuro will tell you to take it more often instead of taking higher doses. That makes a lot of sense.

Understand that too much Mestinon can make you weaker. So pay very careful attention to how it affects you. If you keep a journal, you will be surprised at the patterns that show up that you hadn't noticed. Write down when you took the meds, what symptoms you have when, and anything else that seems relevant: how much sleep you got, what activities you did, any emotional upsets, heat or cold. A lot of MGers do better in the cold.

Some people find they need Mestinon at night, if they wake up choking or wake up with double vision (your eyes move in your sleep). If you do, ask for Time-span, a time-release version of Mestinon that saves you from having to get up in the middle of the night to take a pill.

Again, take new symptoms seriously! Any trouble breathing, choking, or sudden or extreme weakness can be a sign that you're headed for a crisis, which is a medical emergency. There are emergency treatments for MG.

Abby

Thanks for the advice - neuro warned me about the trots side effect but I've actually been experiencing something more embarrassing (although it does have a hilarious side to it) over the last 12 hours - instead of the trots, grammy here has the toots which happens to have my 5 year old grandson (who lives with me) in hysterical fits of laughter and trying to compete to see who can make the loudest sound! Ah well, I'd rather be giggling, laughing, tickling, and tooting away with him then sitting and wondering why I can move to play with my little guy.... Air freshener is a cheap price to pay to be able to play with him again..... :D

Quote:

Originally Posted by Ravenred (Post 823754)

Good point to consider. BTW - does any one wear a med alert? I use to wear one for med allergies (which after all the reading I've been doing may actually not be allergies! -:eek:

I don't wear a med alert but I do have a wallet card that Dr. Nicolle put together for the Ontario MG chapter. It has instructions to the doctor and a list of drugs that can worsen a MG crisis. It also has a spot for your Neuro's contact info and your GP's contact info.

....instead of the trots, grammy here has the toots which happens to have my 5 year old grandson (who lives with me) in hysterical fits of laughter and trying to compete to see who can make the loudest sound! Ah well, I'd rather be giggling, laughing, tickling, and tooting away with him then sitting and wondering why I can't move to play with my little guy.... Air freshener is a cheap price to pay to be able to play with him again.....

LOL!!!!! :ROTFLMAO:

Like you said - - small price to pay. I'm glad you are responding so well to the Mestinon. Nice to have some 'staying power' again, huh?

Quote:

Originally Posted by Ravenred (Post 823754)

Good point to consider. BTW - does any one wear a med alert? I use to wear one for med allergies (which after all the reading I've been doing may actually not be allergies! -:eek:

Yes, I wear a Med Alert Necklace. When I was diagnosed many moons ago (lol...17 years ago) I was able to get my first Med Alert Bracelet for free. Now I think I pay $35.00 per year to keep the membership and all the info updated. I recommend all MGers wear a Med Alert Necklace or Bracelet. I just feel more comfortable wearing mine, especially when I am out in public.

I love your sense of humor about the tooting! It made me crack up when I read your post. Laughter sometimes is the best medicene. At least it makes you feel good for the moment anyway :)

Shari