There are lots of thngs I've done, unaware of the MG. Crawling up the steps at night on hands and feet "energy saving", doesn't everybody? was probably the strangest thing I did without realizing that was abnormal. I quit liking salads for supper, asked to have the carrots cut in smaller pieces--all too hard to chew. Nighttime rituals a pain, brushing teeth and hair, no washing hair unless everything was already laid out. Leaning my chin on my hand at the computer although it interferred with typing--little things. We had a similar discussion some time ago and my husband who had just realized about the steps (I didn't do it in front of him, that would have been undignified--what was I thinking?) said instead of bweeds I should be "nightcrawler."
b.
AKA nightcrawler

I asked my ex if he remembered anything indicative of my having had MG back when we were still married, and he recalled that, when I was pregnant with our now 8 year old, I would get very weak after hot baths.I would wrap myself in a towel and head straight to bed, and still cannot do more than head straight to bed after a hot bath. No hair combing. No dressing. I cannot believe that neither he nor I rejected that behavior as normal.

Falling asleep during the sermon at church surely must have been an early sign of MG. Although I was diagnosed only 7 months ago, the sermon sleeping had been happening since I was in the nursery room
;-)
Actually, just a few months ago, and a few months into MG I had all sorts of coping strategies.
All those things the doctor told me--like taking my mestinon half hour before eating; timing my computer use after mestinon so I could use my fingers, driving with my head way back because if I looked out of the very bottom of my eyes I didn't have double vision, and all sorts of stuff like that. One adapts quickly to try and keep some semblance of a normal life.

Hi Debbie,

It sounds like it was a tough time even though you managed.
I think the brain works in a very odd way sometimes. 3 weeks ago I felt faint on an airplane and when it landed I could hardly put one foot in front of the other. Breathing was also affected. Well now 3 weeks later the brain has conveniently moved on after not having a repeat of those symptoms!......

Like anyone, I was a master in compensation techniques :) Laying down on the floor in my locked office at work many times during the day and even having a best friend chat to me whilst I was on the floor and she would be on a chair! I got so used to resting my trunk muscles like that that I didnt think twice until I saw another good friends expression of concern.......

I would put on my make up every morning with elbows pressed into the stomach and when my husband asked why I had stopped reading the paper I realized that my hands were too myasthenic to turn the pages.......

I would change language with reading a bedtime story to my little boy as the new language was much easier on the articulation and I could get away with not sounding like a drunk for at least a few extra pages using the easier language........

And then we compensate by going out and getting a new prescription for a pair of glasses that we dont really need. Or at least for me the old glasses worked again with a dose of medication.....

The brain would automatically wake me at about 3 in the mornings to briefly enjoy being symptom free during the night and that actually helped me stay mentally strong during the worst period.

My ears got used to hearing out of tune guitar music because yes, I could strum for a short while but turning one tuning peg was out of the question for two years - it used up the full energy tank - that is on the day I could actually turn the peg........

I also compensated on my own dignity at the doctors office. Most people either know or can imagine that scenario........

Take care :)


Calmday

@RussHanson - sorry, can't resist saying it: I think half my church members must have mg!

After I finally found a neuro that listened and knew mg, she asked me about different things that I didn't realize I did, such as wanting to fall down after a hot shower and having to prop my head up while sitting down. The chewing at meal also wore me out, but I didn't know why any of these happened until she told me.

My neuro said to stay clear of heat; no hot tubs, no hot showers. He even suggested I move to a cooler climate. Repetitive chewing wears me out! I rarely have a steak now and I love, love, love steak.

Debbie,

Don't avoid the milk products, esp yogurts etc because of concern about phlegm. It does not cause phlegm. Things getting stuck in your throat causes phlegm or an infection can. Not milk and its products. It can thicken saliva and/or phlegm present already though and I do know the difficulty in swallowing even water when times are bad with MG. Coming out my nose and choking on just water(sigh-mg sucks and is soooo frustrating). Having said that, I never stopped having milk products due to swallowing concerns. I wouldn't tell anyone to stop unless they are allergic, which is uncommon or possibly diabetic. When we are sick we should be pounding water anyway and water should be our most consumed beverage...for everyone.

"no statistically significant overall association can be detected between milk and dairy product intake and symptoms of mucus production in healthy adults, either asymptomatic or symptomatic..."

http://www.ncbi.nlm.nih.gov/pubmed/2154152
"milk doesn't cause your body to make more phlegm"

http://www.mayoclinic.com/health/phlegm/AN01455


We know how you feel here!

I am so thankfully when I read these posts and finally feel I am not alone. I replaced all my door handler with levers and had the door mount on the bathroom reinstalled backwards, so if I am on the floor it can still be opened outwards. For years I pushed the laundry down the stairs with my feet so I did not have to carry it down, hoping no body would see this. Then watched as one of the kids did it thinking that was how you take the laundry down. I have forgotten how great-full My toes are after starting mestinon that I rarely drop knives on the floor. I joined the group recently because I was feeling very depressed about how long life needed to be like this. I have picked up many helpful hints, but most of all no longer feel alone, thanks. I'm so happy to hear I am not the only stair crawler.