WHOA, Teresa -- LOL. First thing, MG is NOT a "death sentence". True enough that we don't always lead "normal" lives like some of the literature says. But, I am a pretty optimistic person. I think that most of us ADAPT to our circumstances. We figure out HOW to manage with "the beast". MG usually isn't painful -- so, I tell people all the time that if I HAD to have "something", MG "ain't" so bad.

Now, you said you were negative on the "bloodtest". Did you ONLY have the AChR test? Did you have the MuSK test, too? I ask BECAUSE your journey will be easier and smoother IF you have positive bloodwork. You can STILL have MG with negative bloodwork -- and honestly it sounds like YOU do -- with the positive SFEMG and the ice-pack test -- but, the docs LIKE to see positive bloodwork. Just being honest, here.

BTW, it is unlikely that Mestinon will do anything to your ptosis (drooping eyelid). For some unknown reason, Mestinon doesn't work very well on ocular symptoms.

Welcome to the group!!!

I know that MG isn't a death sentence - it's just that my parents do research on the Internet, too, and of course the respiratory MG crisis is brought up, and they've already lost one child. Mostly I don't want them to worry too much, and I want them to know that I will be able to take care of them when the time comes.

I appreciate the kind words - yeah, middle age is just a barrel of laughs! I will have to say that I have enjoyed the freedom that comes from being able to speak your mind with advanced age - I don't worry much about what people think about me any more. As I like to tell people, I've raised 3 teenaged girls - there is NOTHING that you can do that will scare me now!

I guess now I just worry that every time I have a "symptom", I'm going to attribute it to MG, and every time that I read about a symptom, I'm going to be like all of those 1st-year medical students that you hear about who are sure that they have whatever disease it is that they are studying that week. Lord knows, I don't WANT to have MG, but if that is what I am looking at, I want to know ASAP so that I can go from there.

I mean, after I had the ice-pack test, I started thinking back to the past couple of months when I had been having some vague things going on. Of course, I started correlating them to MG, even though I hadn't seen a neurologist yet. I had noticed a few months before that sometimes my jaw would get tired when I chewed a lot; sometimes my arms felt almost limp, but not really, if you know what I mean; sometimes it was hard getting up the stairs at night; sometimes when I would get out of bed in the middle of the night I would have to stand there for a couple of seconds, just to make sure my legs were "all there". I haven't fallen, and I haven't ever felt numbness, so I guess that's a plus.

And it's hard explaining to my husband how it "feels", because there really isn't any good way to explain it. My muscles don't really FEEL like they aren't working; they aren't wasting away, and it doesn't sound like they will. So they feel strong to him. And I certainly don't LOOK like there is anything wrong with me, so it's hard for the family to "believe" that I am really as tired as I say that I am! And that makes me feel like I am all kinds of lazy, even though I know that I'm not.....

When they asked me how long my eyelid had been drooping, I had to tell them that I honestly didn't know, because for several months as the evening wore on, I always thought that my contact lens was just out of place in that one eye. I never thought to look in the mirror until that one night that I thought that the contact had split. So the eyelid may have been drooping much longer before that; it's just that no one really noticed it. And it's not so bad that people WOULD notice it, unless they were really paying attention (and of course, once you point it out to them, they go, "Oh, yeah! Sure enough...."). Only one person noticed it without us mentioning it, but it doesn't really become noticable until after 8:00 at night, unless I've really been using my eyes a lot.

Anyway, thanks for the help!

jana, really? Im not doubting you but 10 days after I started taking mestinon, my vision problems dissapeared, and have not returned for over a year.(Now Im on Ivig, but the mestinon cured both the double vision and droopy eye, not to mention light sensivity and some sluggishness)
I guess everyone reacts differently.


Teresa, hi!!!!!!!

Work with your neuro, people here know their stuff, you can say anything you want here, nothing is off base(ya know what I mean), Ive discussed stomach issues with mestinon to teeth clicking here. And this board has people that have been there and understand. Better sometimes than talking with family.
Openly discuss your issues if you need to vent.

hahahahahahahaha -- yep, Allen, you are the "oddball"!! It is wonderful that the Mesty worked for your ocular -- I've heard of maybe one other case -- but, it is very rare. (Mesty works on every afffected muscle in my body BUT my eye muscles.) Maybe Teresa will be one of the LUCKY ones!!!

Allen is right, though, Teresa. We talk about EVERYTHING. A warning, though. IF Teresa Koch is your REAL name -- you might want to join/rejoin using just a first name -- or a nickname. This is a FORUM. That means that our posts show up in Google alerts and in other ways on the OPEN internet. This is NOT like a closed group with security and PRIVACY. So, you may not want your "personal business" attached to your REAL NAME posted OUT there in cyberland where just ANYBODY can read it.

http://www.aapos.org/terms_faqs/faq_...sthenia_gravis

How is myasthenia gravis treated?
Myasthenia is rarely cured, but the symptoms can be improved with a number of different medical or surgical interventions. The main goal of treatment from a biochemical perspective is to increase the amount of acetylcholine available to the receptors on the nerve endings in the muscle. This can be done either by increasing the amount of the acetylcholine itself by minimizing its breakdown, or by destroying the antibodies that are attacking the acetylcholine receptors. Mestinon, or pyridostigmine, is a cholinesterase inhibitor which blocks the breakdown of acetylcholine. This is a commonly used medication to treat the symptoms of myasthenia, but it has been demonstrated that this medication is more effective at alleviating the non-ocular symptoms than the ocular ones.

http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf

Although often effective, AChEIs (Mestinon) are rarely sufficient alone, and a common clinical observation is that they are even less effective for the ocular symptoms of MG, which are more responsive to corticosteroids. (Page 9)

This is by Dr. Michael Nicolle from Canada.

in the beginning, my neuro was pretty much convinced I should start prednisone, but I refused any steroids.
He said, ok, see how the mestinon works, and was a bit suprised I guess.

Hello Teresa.

I wanted to add that Mestinon helped my droopy eyelids and droopy face very quickly, I think after a few weeks of taking it. And it finally made my double vision better after 5 months of taking it. I take only Mestinon for my MG.

I appreciate all of your help - please keep the info coming! My neuro's office called yesterday, and I am scheduled for a Tensilon test a week from today. I'm hoping there won't be any side effects from that, as we will be going out of town later that day.....

I have worked up to 1 1/2 tabs of Mestinon in the afternoon (per my doctor); I start taking 2 tabs today. It hasn't seemed to help the eyelid much - although I have noticed that it appears to be better the next morning - but I do think that I am noticing feeling slightly better in the evenings muscle-wise. Of course, that could just be a placebo-like reaction - who knows? The brain is a funny thing.....

I am hoping that being on a gluten-free diet the past 2 years has helped in some way. I guess I won't know for a few more months, but I'm sure that it can't hurt! As I said before, I had started feeling so good after eliminating gluten from my diet (I later discovered that I tested positive for a wheat allergy when I was 9 - go figure ....) - it would be nice to get back to feeling that way again -

Anyway, thank you all SO MUCH - I can't tell you how much hearing from all of you has helped my peace of mind!