I started having problems after a major surgery in early November of 2007. Within a month after, my left eye began to droop. After numerous appointments with eye doctors, I was sent to a neurologist who confirmed that I had MG, but he knew almost nothing about it. So, after careful research, I found a neurologist who is Chief of Neurology at one of the most prestigious hospitals in the state. He confirmed the diagnosis with SFEMG. I also had a positive ice test, but the blood test was negative. He said that it was only in my eyes. That was two months ago. Since then, I have started to have new symptoms. My jaws ache after choir practice; this last week my throat muscles ached and felt quite strained. I had one episode of almost complete weakness in my right arm where I could barely pick up a pillow. That was scary! I am suffering from bad insomnia. Is this a symptom of the disease or is it just the stress? I am not on any medication for the MG yet; the doctor said that mine was so mild at the time he wanted to take a "watch and wait" approach. But that was before I started having other symptoms!

I am totally confused and distressed by everything that is happening to me! Any advice or help from others dealing with this nasty little disease would be greatly appreciated.

If stress source, try not to panic, I know hard to do but stress only makes MG symptoms worse.

I was only diagnosed last november and immediately heard all the horror stories, but neuroligist put me on mestinon and after about month had symptoms well under control.Still get occasional tightness in throat when stressed etc but tablet quickly eases situation. If throat syms etc as scary as you say would try to persuade doc to give you mestinon, even small dose to see how it works for you.

My situation is somewhat similar to yours. Ocular MG symptoms following surgery and mild generalized symptoms a few months later. I am surprised that your Neuro is not taking a more aggressive approach. I would definitely go back with these new symptoms and see if they think you can get started on some meds.

I am in the States as well and I have learned that not only are all patients different, but doctors in different parts of the world take a different approach to treatment.

I'd bet your insomnia is due to stress due to the uncertainty of the MG. Even more reason to go back to your neuro for further study. Take a deep breath, you will be ok. But you have to be an aggressive advocate for your own care.

As far as my doctor, he has been dealing with myasthenia for 35 years and is supposed to be one of the best. My next appointment with him is August 14th. Will discuss medication at that time.

When I first went to him, his attitude was not the best. His words to me were "You've been on the internet and have yourself convinced that you have this disease, don't you?" I had never even heard of MG until my eye doctor mentioned it! My reply was "I'm praying that you will tell me that I don't!" But, of course, the eye tests confirmed the ocular MG. His attitude changed when he did the SFEMG - he stated that I had "very abnormal" muscle activity. He seemed surprised by the results because, at that time, my only symptom was mild drooping of the left eye. He said that he could go ahead and put me on meds or watch and wait. Since my symptoms were so mild, he said that he would reevaluate at my next appointment.

Since then, things have definitely changed. The night when my right arm was basically useless was very scary - for me as well as my husband. Thankfully, that has only happened once! Now I am having muscle spasms in various body parts.Has anyone else had muscle spasms or twitches? I sent him an email, and he said that spasms are not associated with this disease. Oh well, the fun never stops! LOL

I have since gotten involved with the association branch in NI, helping out with fund raising and education programmes. This gave me contact with other sufferers which helped a lot.

Don't know if MG foundation of America (google MGFA)runs a branch system but would be worth pursuing to get contact with others, can be really helpful. Else feel free to contact me either through this site or on my personal email at derekj.scott@tiscali.co.uk.

Interesting your comment about giving up work due to stress, resigned myself last Wednesday due to stress at work. How did it work out for you? what you doing now?

However, I have tons of stress in my life due to family members! My mom and sister, who I am actually very close to, are quite needy. My sister is one of those people who, if you have a problem, she always has a story to "top" yours! How annoying!:( I have this funky weird disease, and all she wants to talk about is the fact that she has pulled some muscles in her chest and is in agony. I have definitely learned that problems are relative. You may think you have problems, but you really don't realize what it means to have true problems until your health is an issue. My mom is one of those people who talks about the same approximately 10 topics on a rotating basis. My dad has CAD, CHF and HCM (all MAJOR heart issues), and all she does is complain about the bills that are coming in or the fact that all he wants to do is lay around. He just had a stent put in about a month ago and had triple bypass four years ago! It is astonishing to me the ignorance and insensitivity of people concerning health problems, when they have never had anything seriously wrong with them!

I apologize for ranting, but I just get so darned frustrated. And, because it is my family, I really don't have anyone to talk to and my husband get tired of hearing it.

Anyway, we (my husband and sons) are leaving in three days for a 10 day vacation to the beach. I can't wait to actually have some to time to relax and decompress. No phones, no extended family, just sun, wind and ocean waves!:) Just praying for no hurricane activity!