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 - - 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

Well, I guess Monday is "Wacky Doctor" day.

I'm glad your doc ran a chem panel plus the Acetylcholine antibodies. Why is the doctor ordering an MRI right away? Why not wait? If the Acetylcholine antibodies come back positive, you're going to need a chest CT to look at your thymus. More radiation. Is the new doctoring all about doing the most expensive tests first? Why not an EMG first? A Single Fiber EMG? And why not the MuSK antibodies?

It sounds like your neuro read that tiny little page on MG in the medical school textbooks that says we are fine in the morning and get worse throughout the day. Well, if I run errands in the morning without enough sleep, I'm toast by noon. Then I'll nap, regain strength - maybe - and then do nothing for two days. MG is unpredictable and you can't say things that generalize about it like "MGers feel strong in the morning." Not if they're not on drugs, they're don't. And there are other things that come into play like if you are a restless sleeper and use muscles at night. Or if you don't get enough sleep at night.

MG is all about getting worse upon exertion or repetitive activity. What if you start out bad? Then you'll get even worse. And if you aren't on any drugs for MG, you'll be having symptoms all the time, 24/7.

I really don't understand neurologists. Here you are, having had symptoms for a long time now, and she just wants to lump you into a category (fibro) which she obviously thinks is a dumping ground diagnosis. Like Sue said, you can say "no" to anything in medicine. Tests or drugs. Or doctors.

I think your neuro is out of her league. But what do I know, I haven't met her. Maybe she's brilliant. Give her some time. Some doctors just don't "get" MG and have to be helped along. Maybe you don't have MG but it would be nice if you'd at least get the standard tests done for it to figure that out!!

I dunno, Jaimee, I've been through too much with neurologists to be very supportive of them in general. There are gems out there but we often don't have the energy to go mining for them.

I hope you get answers soon.

Annie

I really appreciate you guys
I think the reason she's doing the head/neck MRI (yet again-3rd time now) is that it's been 2 years since I've had them done? She said something about she feels like we're still at a stage where we need to rule out the "major" things. I guess the only thing that bothers me about that is that I feel like if we rule out the major things (MS-again) then I'm supposed to be thankful I'm going to live and not care if I can actually treat what I have! I don't think she ordered the musk antibodies or the chest MRI because she really doesn't think I have MG... You know the whole thing about not feeling normal in the morning... NO idea. Perhaps I don't have that, and that's fine. But I'm not doing this searching and going to doctors again just for kicks and giggles. I'm ready to get treated so I can at least feel like I'm doing all I can do to improve my health and be there for my family and live a full life. My family doc already said that if I go through her and I feel like she's not taking me seriously or like she's brushing me off, he'll refer me to someone else. He said when it's gotten to the point where I have times I can't drive or pick up my 3 year old, then we need to find out what's going on. So we'll see. I go in this morning to give them blood and an MRI later this week...

Got my labs back and all is "normal." Guess I should be feeling better then huh? I go for the head/neck MRI Monday. I don't really think they'll find anything either. I've already done it twice before. Don't really know where to go from here. I just know I can't accept a diagnosis of fibromyalgia, a pain disorder that they can't treat since I don't have pain. Stupid doctors. My husband wants me to go back to my primary and ask to be referred to someone else. I just want to be done.

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

I hope you get a diagnosis soon.

I wanted to let you know that I had morning weakness due to MG until recently, now that my symptoms are under control (but not gone). I think that when MG is bad you never really get rested enough to feel strong, even in the morning.

Since your symptoms sound like MG and the doctors haven't figured anything else out, will they will trial you on Mestinon?

I have not gotten my test results, a copy I mean. I was too shocked on the phone to even ask for the values. I just know they're "normal." I'm not sure if I should wait this out and after I get my MRI, go back to the neuro appt I have a month from now... I sort of feel like she's just going to slap fibro on me and tell me to learn to live with it. She's the same neuro who "diagnosed" me with Hemiplegic Migraine without head pain the last go round, and prescribed Topomax telling me "let's just try it and see what happens..." Well, it didn't fix my problems and gave me actual migraines with head pain! Grrr.

I don't think SHE will do further tests for MG. Honestly I get the feeling she doesn't have much experience at all with it. But then my family doc said to come back to him if I wasn't satisfied with what she does for me... I just don't know whether I should wait til I see her again? And make sure she really is a jerk and it's not just my overactive imagination (you know, the same one that's given me all these lovely symptoms). My husband has a nurse practitioner friend who has shown an interest and wants a list of my history/symptoms. He said maybe he can help us navigate the waters. I hope so.

Oh meant to say, I don't know if my family doc would trial me on mestinon or not... It's strange, because for a family physician, he seemed awfully sure that that's what I had... That's why he referred me to the neuro. He even gave us the webmd page to look at. I thought that was odd. I don't know if maybe it's just protocol to refer that kind of stuff or what... He said he remembered seeing a test done for it back in med school but that it was more up the neuro's alley... I mean, I'm not convinced it's MG, only because of the vomiting that I have had sometimes. And I'm not one to just have an overactive gag reflex or anything. It hits and it hits hard. But like someone said, perhaps I'm dealing with more than one thing. That would be fantastic

Jaimee, I'm being trying to "mesh" the vomiting with MG. This is all I could possibly figure out: When I get double vision in all directions EXCEPT forward (this is hard to explain unless you have had it) -- I see double peripherally to the right, upwards, to the left, and downwards. It makes me POWERFULLY dizzy. Like I have to hold on to something or I will fall down. Anyway, my mom and sister suffer from inner ear -- and when they get THAT kind of dizziness, they have AWFUL vomiting episodes -- almost like projectile vomiting -- it seems to go on and on. They take Mecl--something, well the other name is antivert, for this. I wonder IF you have double vision that makes YOU so very dizzy that it upsets YOUR stomach? The docs say that this is what happens with inner ear.