Hot showers are the worst thing for me...can't even lift the towel up to dry my hair! Usually I take lukewarm showers and then blast the cold water for a bit at the end.

Yes to all the things you have noticed....eyelids, frowney face, etc. My husband can 'see' my face melting and asks if it's time for a pill now!! But my first complaint that started the search for a dx was my right arm. I couldn't get it to work as long or when I wanted it to (still can't!).

Some other things that can impact MGers:
stress
not getting a restful night's sleep
alcohol
many drugs (OTC or script) are contraindicated

Re: bloodwork
My neuro swears Athena Labs are the only ones who can properly run the tests for MG. Even so, my insurance company would not cover Athena doing the tests...and all my antibody tests came back negative.

My neuro did a full thyroid panel, voltage channel c and k, vitamin b12 and d levels, complete IG panel, ANA, ESR, SLE, BUN, and creatin. A lot of that was differential dx stuff as opposed to things that related specifically to MG.

Keep asking questions and pushing for answers. You have been through such a great deal in such a short period of time and your body is still trying to recuperate from all it has been through.

Thank yall all so much!!! I can't tell yall how great yall have been, and how much I REALLY appreciate your time!!

Thanks Mike- I may have to try those tricks!!! I will make sure they test for the musk, binding and modulating. . I will be anxious waiiting to see if they are positive!

Abby- That's interesting, glad that they have found a treatment that makes you feel better at least!!! I can't wait to start my IVIG!! One of my fears is that they dont' figure out what's going on, and IVIG doesn't help so they wont' know what to try after that for this mystery illness! My weakness is so diffuse, i feel like sitting upright sometimes is just too much, smiling and talking, well just about anything really. I'm only 31, I feel like I'm supposed to be able to do simple things.. right now everything is so difficult!

Suev- that's interesting about your arm being the first symptom.. When you say it won't work, what do you mean by that?? I had all over generalized weakness, shortly after the eyelids not closing symptom began. I went through a time where I couldn't even stand on my toes hardly, I was just SOOOO weak!! But i just kept thinking i was sick with a bug or something, it wasnt' until my hands became REALLY weak- they never get better weak- floppy fingertips and thumbs that dont' work that I realized something was REALLY wrong! OO and I remember thinking a while back after I took some benadryl that all of my symptoms seemed WAY worse... didn't think much of it, then a week or so later took some more and again symptoms flared.. I had heard that antihistamines could make myasthenia worse, and thought huh? I wonder if that is pertinent? Guess it might be!!!
Thank yall.. I sure hope we get somet answers soon! I hope we are on the right track!!! I was at work today and I have to talk a lot, My speech became more slurred, and my face coudln't make the laughing or smiling "face" anymore until I just stopped talking and smiling for a while.. then I could again for a bit.. I just wonder if there is anything else out there that could cause symptoms like that?
Do any of yall have slurred speech? Do certain words seem to be worse, or is it just when your tongue tuckers out everything is funny sounding?

A few years back when I still had my horse, I noticed that I couldn't brush her very well. Very odd...hard to get right arm up to her back, brush and curry comb would 'fall' out of my hand. Got to the point where I was becoming quite good with my left arm/hand.

Then it started messing up my golf swing. I couldn't control the club after 16 holes or so....then 14 holes....then 12...etc.

Then I couldn't stir a batch of cookies with my right hand...or the frosting...without switching off to the left. Even handwriting...after about ten minutes was almost illegible!

Now those were the things I noticed. The ptosis, the difficulty walking my mile in the morning (suddenly breaks were required!!), the trouble getting out of my chair without the help of my arms, the sheer exhaustion I felt at times....nope, none of that registered!!

suev- wow.. That is interesting that it occurred more strongly in one arm! That makes me feel better, it's sad, but the thought of having to stir cookie dough sounds outright impossible- I don't think that's normal for a 31 year old to think huh? I know brushing my hair requires breaks, so I can only imagine lifting my arms for a horse - I used to ride as well, before I was pregnant, I'm sure if I could even get up on one, I wouldn't stay there for long now!! Do your symptoms still predominate in one arm more?
My hands are the worse, face and mouth next, shoulders and hips pretty awful and well just my whole body really! My dr is going to run the Musk panel... Also I got my ANA results today (previously they had been barely high at 1:80, which we didn't even think much of) but now they are 1:640, which from what I read is signifcant.. Does MG tend to have elevated ANA's since it's an autoimmune process?? I'm hoping that will help with getting the IVIG covered by insurance!

Yes, the right arm is still the weakest limb - - but is helped tremendously by Mestinon.

My understanding from my PCP is ANA is a non-specific indicator of inflammation elevated in response to an autoimmune condition. While it's an inexpensive way to see if something autoimmune may be going on, it is non-specific. Other tests have to be conducted to dx.

Thanks suev!! that is really interesting about your right arm being mostly affected!!
I worked all day today, and even by mid morning my shoulders were burning with exhaustion just by the weight of my arms (has that happened to yall??) My face and everything else was exahusted as well.. but I realized I have really noticed it in my shoulders from the weight of my arms/arms swining when I walk maybe.. I realized I hadn't been swinging my arms much when I walk recently after someone at work made fun of my slumped over no swinging arms motion ha.. i'm sure it was a funny sight for them i suppose!
Also I got home looked in the mirror (after all day of double vision), and my eyelids were in fact droopy!! Not overly like unable to open or anything, but defintely noticable.. I have never had "hooded" eyelids, i have bigger eyes that the fold has always been very visable, and they were very hooded this evening! like I needed an eyelift! Does that sound like the MG type of eye "droop"?
I should be goign to get the Musk testing tomorrow (we had to call and check where to get it done etc first). I'll let yall know! The thought of possibly feeling better with the help of some treatment is SOOOO exciting!!!