Hello and thanks for reading this. I have had muscle weakness (with no pain) for the last 10 years. It has progressively gotten worse since It started. I first noticed it when lifting weights, randomly some days I just didn't have much strength and couldn't do many sets/reps. It slowly progressed to a everyday thing. About 5 years ago I started on a whirlwind of doctor visits, tests and disappointment. To date I don't have any any answers but I feel I am close. Here are the tests that have been done, afterwards I will list my symptoms:

Tests:
3 emgs, all negative
All common blood tests done by a rheumatologist, all negative
Mri of brain with contrast dye, nothing unusual
Single fiber emg, negative
Slightly deficient in vitamin d, supplement hasn't helped
Got a sleep study and that showed I stopped breathing 4 times per hour for a non instruction cause. I have a cpap for the next month as a trial.

Common Unusual things going on for the last 10 years:

Significant weakness that gets worse as muscles are used
Weakness gets better with a pause in using the muscle
Weakness all over body, worse in shoulders and arms/hands.
Weak diaphragm/lungs often.
Double vision when looking to the left

Things I have noticed in the last year:
If I try to raise my arms out to the side and hold them, I barely can hold them for 10 seconds before they drop. If I do this and count out loud I lose my voice. My voice literally changes to a weird crackly sound and I will completely lose the ability to speak in40 to 50 seconds of holding my arms out. I am not out of breath at all during this. I found this out shooting a video to show my neurologist that I can't hold my arms out, I had no idea I would lose my voice previously. I have a feeling anything I did that would require physical effort could cause the same thing.

I have double vision when looking up and my eyes twitch if I try to stare at something while my eyes under stress (like looking to the right)

My eyesight will randomly blurry when reading something. If I close my eyes I find out that often times my right eye has lost focus, and it takes a little bit to get it to focus back.

My right eye tends to droop, and if I close it a bunch and open my eye it tends to sit low. If I try to open it wide open I can for a very short time before it returns to where it wants to be. If I stare upwards the lids tend to stay open, but my eyes have a tough time staring up for a while and will fatigue.

Randomly I will slur my words and have a tough time pronounciating, much like being drunk.

I am clumsy and drop stuff all the time.

I am extremely tired most of the time, and can sleep excessive amounts

Things that make it worse: hot water showers seem to wipe me out bad. If I sit out in the freezing cold I seem to gain strength but I don't feel good. Caffeine seems to help the fatigue, but upsets my stomach. If I try to push things in one day, the next day or day after I pay for it via even more weakness. I just got a cpap machine and my symptoms seem to be worse since I have been using it, it could be due to my body being exhausted fighting the air pressure (even though the machine backs pressure off when exhaling).


Overall of convential things it's looking like either MS or MG. I haven't had a positive test for MG yet other than having the symptoms. Same thing for MS. Overall my symptoms seem to fit MS but I don't have unusual feelings, pain, or similar. I just fatigue really fast. I am going back to the neurologist in 5 weeks. I was sent for the sleep study to rule out narcolepsy as being the cause, which that and sleep apnea have been pretty much ruled out. If you have any suggestions, ideas, comments, etc I would appreciate hearing about them. It has been a struggle for me lately and it would be nice to have a little hope. Thanks -Greg

Greg,

That sounds like a pretty classic list of MG symptoms. Ask your Neuro if you can try Mestinon, just to see if it helps. If it does, then that is another indicator of MG. If it doesn't, or makes you worse, then you should perhaps look for a different diagnosis.

It is at least a drug that acts quickly (30mins) and is out of the system fast if it is inappropriate. (4 hours)

Hi Greg,
I fully agree with luliejayne, give a try with Mestinon, one 60 mg each 3 hours, if your symptoms worsen, STOP. I you feel an improvement, go on!!!
Maurice.

Sounds a lot like myself. Just diagnosed with seronegative mg. Originally my eye doctor caught it and got the ball rolling to being diagnosed.

Had all the tests you have listed, blood work, EMG, SFEMG, nerve conduction, tensilon etc. and all were negative. Still show all the classic signs as you did. Neuro said I don't have it and Family Dr. said I do. Family Dr. started me on Mestinon last week.

I Took the first days worth under his supervision so he could monitor me. After 45 minutes my eyes began to water slightly and at 1 hr 15 minutes I noticed my right eyebrow shot upward like I was "eyeballing" someone. Then about 2 hrs in my left eyebrow was up about half of the right. My breathing (chest) improved, and the choking was not so bad.

I started on 30mg 3 times a day. Moved to 30mg 4 times a day now and will move up to 30mg 5 times a day next week. It takes me about 45 minutes to feel the effects and they fall off at 2 1/2 hrs like clockwork. So there is quite a gap between doses and from my last dose at night until morning. I am hoping to try timespan soon to help get through the nights. I would also recommend taking this medicine with food.

I will say that at the current dose I am fine until I become stressed or do any physical exertion. As this happens I can feel my eyes start to fall, my breathing get harder and just back to the way things are without it. Once I get rest things get better.

I hope this helps.