Hello!

With the exception of the nausea and possibly the pain, it sounds like you have MG.

All of these you described are things I have had and are definite symptoms of MG: eyelid and mouth droop with heavy feeling, hand and arm and leg and neck weakness, choking, slurred and nasal speach, vision problems. As far as I know these are classic symptoms.

Pain and balance problems are not directly associated with MG, but can be caused by weak muscles. Often I strain my muscles because they are weak and then later they hurt, but this pain is not directly caused by MG.

Make a list of your symptoms to bring to the doctor.

There are lots of supportive people here. Let us know how you are doing.

Well. I went to my appt today. Pretty much waited for 2 hrs just to go in and be told what tests she's ordering. She's checking potassium, magnesium, calcium, thyroid, acetylcholine antibodies and head/neck MRI. I have to go back in the morning to have the bloodwork done because the blood lady had already gone home by the time I got out.

She said she didn't think it would be MG because I don't wake up feeling "normal" in the morning and then just get worse toward the end of the day? I don't know. My mom (a nurse) said it doesn't always present that way and that it can be normal to have periods of worse/better that can last for weeks at a time like I do. Who knows?

The Dr even said something about the possibility of a "lump diagnosis" Fibromyalgia for when they don't know exactly what's going on... I don't know about anyone else, but I don't want a "lump diagnosis." Especially for a pain disorder when I rarely have any pain! Argh. I'm a mite bit frustrated right now.

Hi Jamee,

I've met many MGers who have morning weakness. This is why they have time-release mestinon- so that the person can wake up feeling strong.

I have very bad morning weakness which mainly affects my tongue. My other areas of weakness do get worse as the day goes on, but my tongue seems to be my antibodies' main target of attack, and they like to do it all hours of the day and night lol...

I take one time-release tablet at night of 180mgs, and 60mgs every 2.5-3 hrs throughout the day.

I hope that you get answers to your problems as quickly as possible. Your doctor giving you a 'lump' diagnosis when she can't figure out what's really wrong with you seems irresponsible, to say the least. Sorry to say that, but I think that if the answer isn't under one rock, you keep turning all of them until you find it, rather than coming up with an invention like, 'Idon'tknowwhat'supwithyousoImadethiswordup' syndrome. It's obvious that this doctor feels that Fibro. isn't a real diagnosis, either, which is kinda interesting.

Good luck!
Nicky

Jaimee, Okay, here's a good thing to do. Sit down. Write down ALL of the symptoms you've had for the past however many years. Anything. Are you missing symptoms? Have you pooh-poohed them?

There are so many possibilities out there for what could be wrong. Celiac disease, for example, is often missed and can cause a boatload of problems. The most important thing is having a doctor who will have the "we'll figure this out together no matter what" attitude.

And it doesn't sound like they have done all the MG tests, so they can't really rule it out yet. Did you get copies of your test results? If not, do it.

I hope you get answers but don't expect them soon. Try to relax about the whole thing because stress is your enemy!

Annie

Jaimee - - I hear you on the 'lump diagnosis'. My GP first sent me to a rheumatologist who said (when the blood work came back) - nothing specific shows up ... but you either have CFS (chronic fatigue syndrome) or fibromyalgia. I can give you a script for Lyrica!!

I declined the script - declined to see the rheumy again - - and put my search for a dx off for about another year or so!! Then things got worse enough for me to open Pandora's box once again!!

Better results with neuro - - though the first one did a bunch of tests (none for MG) and referred me to another neuro!! I did go to another neuro - but not the one he was pushing!! Luckily, I got my dx really quickly with the second neuro....and have been on Mestinon ever since!

Sometimes it takes awhile, but there are good docs out there who will sift through all the info and test results. Just always trust your instincts about whether or not you are comfortable with the direction things are going - -and keep searching if necessary.

Good luck!
Sue