I've been "pondering" -- and wondering WHY it seems like the Mestinon isn't as effective with ocular. I think I've come up with a "working theory". See what you all think.

Teresa, this might help you when you talk to your neuro -- especially if you don't see any results WITH the Mestinon.

Mestinon on its BEST day only gives me about 70 to 80% return of muscle function. That is FINE for arms, legs, neck, breathing, etc. But, even 80% return with eyes STILL leaves you with double vision and a partially droopy eye. To have a relief of ocular symptoms, you need 100% action. Vision is a VERY precise thing -- if you have ever gotten a pair of glasses or contacts that is slightly "off", you know what I mean.

IF you have a SUDDEN onset of Ocular MG -- and it is FOUND quickly by a neuro -- and there are NO "burned out" (destroyed/damaged) neuro-junctions -- maybe the Mestinon DOES restore to 100% (or close).

Anyway, this is my "THEORY".

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.

That's certainly reassuring to hear. Where in Texas do you live? I am somewhat concerned about the heat, as we are supposed to be having 100+ temps here in the DFW area this weekend. What's up with that?

Thankfully, I'm an indoor kind of gal, so the A/C is already cranked up and the ceiling fans are running full speed, so hopefully that will help out.....

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!

Teresa,

I'm a bit north of Galveston - and love the outdoors. I pick my times and have been able to continue yardwork and golf. Can't always complete what I start, but I do what I can.

Have found that sleep is extremely restorative - - I can do much more in a day if I have plenty of sleep (at night and even the occasional afternoon nap!).

Also ice. I wrap ice in a water proof neckband and wear it outdoors- - works wonders!! And finally, indoors or out - - stay hydrated. You simply can not drink enough water.

I also have permission from neuro to boost my mestinon dose substantially before I start outdoor activities (otherwise, I don't think I could handle it).

Hang in there! I'm afraid it's going to be a very hot summer!!

Sue

That's so neat - I was born here in Fort Worth, but we ended up in the Houston area when my dad took a job at NASA. I actually grew up in La Porte - man, that place has grown since I left in the mid 80's! My best friend from HS still lives there (actually, a LOT of my friends still live in the area), as well as one of my paternal aunts. Both of them live near Sylvan Beach....

Thanks for the hot weather tips; I'm sure they will come in handy! Of course, up here we don't have nearly the humidity that you do on the coast. I will have to say that while it tends to get hotter up here, I have always been able to handle that a LOT better than the lower temps/higher humidity down where you are. I do miss the water, though -

Daughter #2 started her freshman year down at our old alma mater (Texas A&M in College Station) this year, and she wasn't quite prepared for the increased rainfall and humidity of that area. We tried to tell her that we were there in the Summer of 1980, when the temps were consistently in the high 90's-100s COMBINED with 90%+ humidity....

That having been said, I don't miss the larger-than-life roaches that come with the humidity - those things are downright scary! I still remember some of those creatures managing to get into our house and camping out under the sink, just to scurry away and scare the bejeebers out of us whenever we opened the cabinet door....