NeuroTalk Support Groups - Tentative Diagnosis-- started mestinon

NeuroTalk Support Groups (https://www.neurotalk.org/)

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

- - Tentative Diagnosis-- started mestinon (https://www.neurotalk.org/myasthenia-gravis/215370-tentative-diagnosis-started-mestinon.html)

Thanks for asking that. I was going to say something, but didn't want to overwhelm you!

If you have swallowing/talking issues, there are some MGers who record a message in case they need to dial 911. It has to be very specific, such as your name, phone (which they can see on caller ID anyway), and why you can't speak (i.e., "I have a disease called myasthenia gravis. It can make me unable to speak due to weak muscles, which is why you are hearing a recording and not my voice right now. I am having an emergency and need an ambulance. I live at ### address.") Or something like that.

It also helps to let your local police department know about this. They are the first responders and it's good for them to know that it isn't a crank call!

Letting the closest hospital know that you have MG and what drugs you're on is good, too.

Falling can be an issue with MG, so if you have a portable phone handy at all times, that's a good idea. So is kid-proofing your home and getting as much off of the floor and out of the way as possible. I can trip on my own feet at times.

It doesn't hurt to let someone know when you're going out. Or to at least check in after you make it back home. That might be overkill on a regular basis, but if you're not doing well, it's sensible.

I always let someone know when my MG is tanking. It also helps to make you feel better, because you're not dealing with it alone.

You should have a medical alert card and bracelet with you. The card should list conditions, drugs, past surgeries, implants, doctor's names/phone numbers, insurance info, allergies, etc. I even have a list of drugs I can't take, for various reasons (some are directly due to MG). Make sure the hospital has that list in your chart.

When in doubt, dial 911. And have a note for the ER doctors to call your neuro!

MG weakness can come on slowly, and you might not notice how badly you're doing unless you do things such as look at your face to see if it's drooping, hold your arms out in front of you to see how long you can do it, grasp something like a towel to see if you can make a dent in it, see if you can take a deep breath in or out (inability to do either is cause to go to the ER), etc.

Just set yourself up for success with MG. It can take some time getting your head around this stupid disease, but it's so much better to have plans in place. You might never go into a crisis—especially if you don't push MG—but it's a hard thing to predict.

Annie

Thanks, Annie.

You're right that's pretty overwhelming, mostly because I take a lot of pride in my independence. But it's all good information to have and will make my husband and family feel better about me being alone here.

Quote:

Originally Posted by ArtandIron (Post 1120873)

Hello again.

So yesterday I met with the Myasthenia Gravis specialist and he does think that I have MG. He did an exam, which showed mild to moderate muscle weakness around my face and neck. He also found a tremor when he strength tested my arms and legs. No weakness there though. He ordered blood work for all the possibly antibodies and thinks the MUSK one is most likely.

And he gave me Mestinon to try. He said it was partly diagnostic-- if it works we can be fairly certain it's MG.

Today was my first day on it. I don't know if it works or if I just want it to work. But I did notice a difference, albeit short-lived. He warned me about side effects but I didn't notice any. I just wanted to know if it seems likely that it was really helping or not since it only seemed to last a couple of hours before starting to wear off.

I also wondered if anyone knew anything about the tremor. He said it wasn't how MG usually presents but it is odd. Does anyone have anything similar? Basically when he pulled against the muscles they started to shake.

One more question that I imagine I'll have to ask when I go back-- I'm a power lifter. Heavy barbell weight lifting. I assume power lifting is out. Does anyone know if weight lifting is completely off limits or if I might be able to stick to lighter weight?

Thanks.

weird did not see my nero .. had a dr telling me to get all my medical records that she will help me file for ssdi . and ordered mg bloodwoork ..... rt eye droopy ~ numb legs/hands .. sonogram friday on thyroid took a year to get to this stage ........ any one get negative blood work and get still get m.g. :confused: