Originally Posted by Moni

I have so many questions. But I will tell you what has happened so far.
In May I was having some pain in my right ear (have had vertigo for about 10+yrs) and my right eye felt funny and my eyelid would droop. I went to my ENT at the first of June. I had an abnormal reading on my right ear and my eye really had her concerned. She ordered an MRI, chest x-ray and thryoid scan (I have had large thyroid nodules, had a partial thyroidectomy in Nov. 07). Everything came back normal. She suggested that I go see a neurologist. I really couldn't see the reason for this because everything came back normal. She had mentioned something about MG when she was having me blink my eyes. I didn't think much about it but went ahead and made an appt. with a neurologist.

Saw the neurologist at the first of July and after his examine he told me I was an "odd" case. He told me to do some neck exercises because my neck seemed stiff and he ordered some bloodtests one of them was for MG and the others were for thyroid levels. All came back normal. By this time I had not noticed how weak my arms had gotten. I would sit at the computer with a clip board in my lap to hold the mouse and keyboard because my arms would kind of burn and feel weak after after about 10 minutes. I continued to due the neck exercises which seemed to make my eye worse and the left side of my mouth would drop a little. I wasn't due to see him until the end of September.

The end of July I had to drive about 45 minutes to my ENT to pick up some drops. When I got out of the car I realized I could barely step up on the curb. During the drive I had noticed that burning feeling in my right leg. I then drove to work and called the neurologists office who informed me that they were booked and couldn't see me until my appt. at the end September. So I found another doctor. I saw the new neurologist at the first of September.

When I saw him I had been having problems with my arms, my walking was odd and slow. My right eyelid drooped and the left side of my mouth was now drooping. He said he didn't know what it was but was but would be sending me to a teaching hospital. They got me in at the first of October. I went in and they ran me through the whole neurological examine and an EMG (normal). The doctor then came in and told me it looked like MG. They ordered the bloodwork for MUSK (still waiting for results). The neurologist also told me that all the tests can come back normal and I could still have MG, but they would have to run some other things just to make sure it wasn't something else.

I was started on Mestinon last Thursday. I haven't had any ill effects from it yet. It does help my facial muscles most although I wish it helped my arms and legs more.
I am now going into my 4th month with my "new" body and I am still trying to cope and learn how to ask for help. I was always been one of those people who would always help others but never wanted anyone to help me. I hope I get a definite diagnosis soon but I may not.

I wanted to ask if anyone else has that burning feeling in your muscles while you are trying to do things (drive, type, fold clothes, clean, etc)?
Also wanted to ask, does it get easier dealing with this? Most mornings I wake up and think that "it" has gone away and then after walking around the house and getting ready for work my legs wobble, my arms are heavy and my face is messed up.
Hope I haven't rambled on to much. Thanks for reading-Mon

Originally Posted by dog lover

Hi Moni,
Welcome to the group!!! I personally don't have the burning but like a couple of others mentioned I have alot of shakiness. Sometimes I feel like I should be physically trembling from head to toe but it isn't always visible.

Originally Posted by bluesky

I should say that I experience shakiness too. Sometimes my arms will shake for hours after I've overused them. Sometimes they'll just tremble when I try to pick something up. And sometimes I feel shaky inside if I overdo it.

Ally