I am newly diagnosed. I have gone through the most bizarre denial - convinced I have been misdiagnosed, its all in my head, etc. I started out with double vision, which drove me to see a doctor only when it got so bad I could hardly drive. (Two eye doctors sent me home saying there was nothing wrong with me). Then, about a week ago, my arms and hands felt so heavy - like there was wet cement in them. I've had tingling in my face and some slurred speech. Zero throat or swallowing or breathing problems. (Which I am very thankful for, especially after reading all of the posts here.) I had a massive panic attack fearing I would stop breathing.

I guess I just can't believe that an otherwise perfectly healthy person can get this strange, random and relatively rare disease. Sometimes I am fine, and sometimes I can't see without a patch and sometimes I feel pain in my arms and neck, as if I've been working out too much.

Now I'm on this brand new drug. The neurologist (who is a very nice man)basically said "you have myasthenia, here's some pills" and sent me home telling me not to worry. I am drooling from the drugs, and still have the double vision and feeling of heaviness in my arms and neck. Its only been a few days, but I'm just feeling scared and frustrated and hoping I'll wake up and this will all have been a bad dream. What's the point of taking a medication that doesn't help the symptoms and leaves me drooling and running to the bathroom?

What can I expect with this? Does this medication work for most people? Do most people get worse before they get better? How long will it be until I know that my case will be mild and not end up with choking and breathing problems? These are questions I wanted to ask my doctor but he just didn't seem to have the time.

Thanks for reading this vent. So glad this forum is here.


K