Hi everyone,
I am new here, and i am so glad i found this page!
I have been reading some of the posts, and i feel like i am home!
I am 23 years old. I was diagnosed with MG in August 2011, even though i had been dealing with it for a couple of years before that.
I kept going to different doctors and everyone looked at me like i was weird.
i kept getting answers like "you're too lazy, you need to exercise more"
"you might be anemic" "you need vitamins" "you're stressed out, here's some crazy pills" lol
After a while i just gave up, i stopped trying to get a diagnosis... life was hell, but it was my private hell. I didn't want anyone telling me i was crazy or exaggerating or judging something they knew nothing about.
back in august i started to notice a droopy eyelid, i freaked!
I was used to my muscle weakness by then, my slurred speech... i knew how to hide them, but a droopy eyelid? where was this coming from?
This time i needed a real diagnosis, i googled and googled until i found a link to Myasthenia Gravis. When i clicked on it, i cried... after almost 4 years i had found what was wrong with me. This was it, I KNEW IT! i printed the page and took it to my family doctor... what a disappointment when she said to me. I know nothing about this, you have to go see a neurologist... but she couldn't even refer me to one. Again, i went on google found a neurologist and that same day i made an appointment.
When i showed up to my appointment i gave him the papers and he dismissed
everything i was saying, he just wouldn't listen. I guess doctors don't like it when a 22 year old girl tells them they know what's wrong with them!
My neurologist is a total *****...
After the bloodwork came back and he saw it was MG, he said nothing else to me. Wrote me a prescription for Mestinon and one for prednisone and sent me home. "come back in 2 weeks to see how you are doing"
PREDNISONE IS HORRIBLEEEEEEEEEEEEEEEEEE!!!
I could one take the prednisone for 2 weeks... i gained almost 20 lbs, I was ALWAYS in a bad mood, ALWAYS crying, but i kept telling myself just wait this will make everything better. Do as the doctor says. NOT!!!
that night i don't know what got into me but i had become so depressed with these pills that all i wanted to do was jump out my car while my fiancee was driving. That was it for me. NO MORE PREDNISONE!
My doctor wasn't too pleased to know i stopped taking them but i knew they weren't helping. Mestinon on the other hand was magic in a bottle. i was back to being my old self. (kind of)
when it came time to see the doctor again we talked about the possibility of a tumor and how i needed to get x-rays to determine if i had one or not. All the test came back normal, so no tumor!
(Notice how i don't know the terms of these procedures, because my doctor i repeat is an *****)
MG i believe is our test in life. After i was diagnosed, everything that could has gone wrong. My fiancee is now my ex fiancee. I guess dealing with an incurable neurological disorder (i hate calling it a disease) was too much for him. My magic in a bottle pills aren't effective as they used to be!
I am dealing with depression, my family is as supportive as they can be but i know they are still clueless to what it is i am going to through. My dad always asks me "are you still sick?"
gotta love my pops!
Thank you guys for reading my boring post. I needed to say these things to someone i KNEW would understand...
