The waxing and waning of symptoms is very typical of MG. Symptoms worsen with heat, stress and activity.

let us now how you make out
kathie

Thank you kathie. I just don't know what to think, so I'm trying not to think about it too much. I know the Achr blood test was negative but my droopy eye & tired jaw after chewing half a bagel this morning seem like MG.

One symptom I hadn't seen much of on here is my feet turn blue sometime with just sitting normal. They'll be cold most of the time and tingling sometimes but I have always thought I had bad circulation. If I rub them a while they'll turn normal color again. Does anyone have this problem and could it beasy MG related?

Elle, Your feet turn blue?!!!

That is most definitely not an MG issue. You need to go see your doctor, and probably a cardiologist, ASAP!

Feet turning blue usually means a lack of oxygen getting to them.

Have you mentioned that to any doctor? Hardly matters, you need to figure out what is causing it right away. I'm not saying that to scare you.

If it happens while you are sitting, I have to wonder if it's happening while you're sleeping. What do your feet look like when you first wake up? If you hypoxemia (not enough oxygen) during the day, it could be worse at night.

Take care of yourself, okay?

Annie

Hi all,
I saw neurologist this week, he dx MG. It was a long 4hr appt but he was very attentive. He tried test on muscle but they had lots of trouble with it (machine) that they finally quit because they had zapped me lots of times. I think that was a EMG test, not sure.

Also I tested negative to Achr test. My vitamin B and D blood work was normal. I haven't any other test for MG.

Dr put me on Mestinon 3x per day. I felt like it improve my eyelid fast, not 100% but a lot better, but this morning it looks droopy again. I definitely have improvement in fatigue though.

The first few pills caused some muscle spasms for about 30 mins or so then stop but that's gone. The mestinon does cause stomach issues but nothing I can't deal with.

My question is, "if" I don't have MG will the mestinon cause any problems?
I should have asked Dr. but it was such a long visit & trying to processes it all.

Elle,

I'm negative on all the tests for MG and was clinically dx'd. At my first follow up apt, my doc asked how everything was and when I said 'so much better I can hardly believe it' she replied:
Well you definitely have MG cause your body couldn't handle that much Mestinon if you didn't.

So I'm assuming that if Mestinon is taken by a healthy person - the overdose symptoms would be exhibited - - and yes too much can be dangerous. But the drug is short acting and does not build in your system..it only lasts about four hours.

So if you have had no (serious) overdose symptoms, I doubt there is anything to be concerned about.

Suev,

How much do you take?

This weekend I decided I didn't have this disease, (it was after reading all about meds used daily for it) and I didn't take the mestinon. Unfortunately I did notice the difference.

I went shopping with my daughter and it didn't take long carrying bags before my arm was so weak, as in dead weak. Also my eyelid was noticeably droopy again. It was early in the morning but still hot out. I felt like my legs did good considering the heat and we walk/stand for several hours.

This disease is so weird, sometimes no strength doing the smallest thing and other times everything is fine.

I sure am moody lately also. I know its the additional stress of going through the dx process but man I'm as unpredictable as this disease.

I was in semi-denial for a year. I knew I had it but did not want to live my life as if I did. Of course I paid for that with time in the recliner and falls.

The meds help, but they never make you back to pre-MG self, that is not a realistic expectation. they make you better, life is more tolerable with them, and you can function better. Unfortunately, my MG progressed and is beyond deniability now.

I both love and hate the meds.
Hang it there. Life is easier with acceptance and learning to accommodate your MG. I had to accommodate nearly every aspect of my life. But life is still enjoyable, just different.

kathie

Elle,
I take 1 pill (60 mg) every 4 hours ...but sometimes at 3.5 hours if having a bad day. I take one before bedtime and nothing during the night.

Kathie, thanks for this, "The meds help, but they never make you back to pre-MG self" it was something I was wondering and scared to ask. Now, how about giving a % figure to it. Yes I know that everyone is different, but are we talking 70-80% or what? I would just like to know what I am likely to be facing, especially as the diagnosis period seems so long.

When I was early in my disease. i would have periods were I would feel almost normal for a couple weeks and then periods were the MG was evident. At that time at only taking 60 mg 3 or 4 times a day, it brought me back to about 75 % of normal. My eyes did not droop, my voice was normal and I did not trip. i worked a full day of work with ease.

About 18 months ago my MG took a step down. I have not had a normal day in 18 months, even while on prednisone, 2000 mg cellcept and almost 1000 mg of mestinon a day. I now have to take 120 every 3 hours of mestinon. It brings me to about 65% of normal - no falling, no choking and no breathing issue. My MG is stable with all the meds. Fatigue is my biggest enemy now.

I am not the norm. Most MGers symptoms stay much more stable then mine. I have other things going on. I am hypothyroid, anemic and they think I may have lupus too. All these things contribute to my weakness and fatigue so you should not judge by my progression.

You will see that with the summer heat, the mestinon may not work as well. MG is worse in the heat so you may need to work with your doctor to up the meds in the summer and reduce them in the fall.

Conserve your energy. Early in the disease, if I had a good day, I would weed the garden or clean the garage. Too much for an MGer, and then it would take weeks to recover. Pace yourself, even on good days.

good luck
kathie