NeuroTalk Support Groups - new to neuro talk

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - new to neuro talk (https://www.neurotalk.org/myasthenia-gravis/54768-neuro-talk.html)

new to neuro talk

Hi,

I have had myasthenia for about 17 years and was diagnosed about 8 years ago. I never knew about this web site and think it will be nice to talk to others who know how it feels. Just reading makes me feel better.

Hello and welcome!

Hi Maria! You have found the right place! Everyone here has been so wonderful and kind:D!You're really going to love it here! So, tell me about your MG...........they call it the "snowflake" disease, since everyone seems to suffer in different ways. How are you feeling? What were your symptoms? How were you finally diagnosed? How old are you? What meds are you on? Do you have a good neuro? I think in my case, the most iporatant thing has been a great support group; something I've found on this site! You are going to love it here! Do you have kids? If you are feeling yucky today, just remember to hang in there - this too shall pass! Have you had IV IG yet? Plasmaphoresis? I know I'm asking alot of qustions, but I'm still kind of new to MG and would love to hear all about you!Tak care and try and get some rest! Erin:D

Quote:

Originally Posted by marias626 (Post 374024)

Hi and welcome!!
Yep its a great place to come and talk.

okay this is the third time today I have started this and never able to finish. So I will try and answer all of your questions. Might have to be in bits though as time is scarce always. I am 42, I was diagnosed in 2000. I had my first real onset of symptoms in 1991 when my son was 5 months old. I had double vision, weakness chewing,smiling, couldn't whistle and most troubling had a hard time holding my son. I had to sit down with him while out a couple of times and rest. I have 3 children my daughter is 22, my 17 year old son and a 4 year old son. In 1991 I was referred to a neurologist (who obviously was not very good) he did an emg on my arms and said I fell into the super athletic range(whatever that means) and said there was nothing wrong with me. Everyone, including me thought it was pyschsomatic and being the days prior to the internet so did I. I thougth I was nuts. I will write more later or tommorow gtg.