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...

I can relate to just about everything you are saying. In my case it took about 10 years to get the correct diagnosis. The first few years my complaints were either dismissed or confused the doctors. Then I was misdiagnosed and all the doctors, even my neurologist, just dismissed the symptoms that didn't fit. Only my pain specialist kept saying that something wasn't right, but he didn't know what.

About the Prednisone--it is horrible, but not being able to open your eyes or walk is even more horrible. Hopefully you aren't that bad, but if its the only thing that helps, thats something to consider. Also, if you ever start Prednisone again, NEVER just stop taking it. Even if you're only on it a few days, taper off of it.

Hi, and welcome. Your story makes me so sad, because it's so familiar. It's devastating to be sick and not be taken seriously. I'm so glad you did finally get a diagnosis. I was holding my breath when you got to the bloodwork part--some people who have myasthenia test negative, and then either they find a doctor who really knows what he's doing (that's my story) or they end up in diagnostic limbo. We have some people in that place on the list. The absolute worst thing, in my book, is being told that it's all in your head. I lived with that fear for about a year before I got diagnosed.

Here's something you need to know about myasthenia (since it's clear that your doctors aren't great about telling you what to expect...): it can tank really fast and unexpectedly. If your symptoms suddenly get much worse, or you're really weak, or you have new symptoms, or you have trouble breathing or swallowing...these things are medical emergencies. You need to get to the ER or call an ambulance.

There are treatments for MG besides Mestinon and Prednisone. Mestinon, as you know, is a short-term drug that just treats symptoms. You should ask your doctor about the possibility of taking doses closer together. Mestinon has a really short half-life, which means it goes out of your system fast. But be careful--too much Mestinon can make symptoms worse.

Prednisone works by suppressing your immune system, so that it will stop attacking your neuromuscular junctions. There are other drugs that suppress your immune system. They work more slowly than Prednisone, but they don't have those awful side effects. Ask your doctor about Imuran (azathioprine) or Cellcept. These drugs sometimes put MGers into remission, or at least lessen the symptoms. I've been taking Imuran for a year. Bad news: I'm not better. Good news: I'm not worse. Other good news: zero side effects.

There is also something called IVIg (IV Immuno-globulin). This is done by infusion, with an IV. It's done in emergencies, if someone is having a myasthenic crisis, or for people with severe symptoms. Some people on this list have IVIg every six weeks for several days. IVIg is a blood product. It's the pooled antibodies of many donors. I think the way it works is that your body sees it has all those antibodies, it takes a break from making its own for a while.

There's one more treatment: plasmapheresis. This is sort of like dialysis. It removes antibodies from your blood. It's usually done in emergencies, but in some severe cases, it's done every six weeks or so.

Your neurologist should be willing to consider other treatments for you. If he's not, ask him to refer you to another neuro for a second opinion.

Welcome to the list, and please feel free to ask questions here. If you start a new treatment, let us know and we can tell you what to expect, what to watch for, etc.

Abby

Sunshine,

I can relate to a lot of your post! I was diagnosed with Lupus 7 years ago and have been telling my Rheumatologist that I was fatigued and lost weight for no reason (10 lbs). All my Dr.s put it down to being "naturally slim." I finally told my Dr. that I was so fatigued when exercising that my muscles burned with very little stress and I wanted an answer for that. He looked at me and I felt like he thought I was complaining.

He did a test for MG and was floored when my test came back very positive! I had been on Imuran (for Lupus) for years and he said that was a med they used to treat MG in the first place! My acteyl-choline receptors were 242 and he couldn't believe it. It was the talk of the office for awhile, he told me. He only does one or two tests a year for MG, but I hope he looks at other patients' symptoms more closely now. My Neurologist was very surprised at my high numbers and put me on IVIG immediately for 6 months. That stuff is great! I can't take Mestinon - it makes my muscles contract painfully. I have had my thymus removed and will see how it goes.

I wish you all the best and I hope your find a Neuro that treats you with respect.

Sunshine--I agree that you should find a neurologist who either specializes in neuromuscular conditions or is open to different treatments. The neurologist who diagnosed me wasn't a bad doctor, but didn't treat enough to know that not all MG cases could be treated the same. He wouldn't even try Prenisone until after I had a thymectomy, even though I could barely function. He had an order of treatments that he wouldn't deviate from...fortunately, the surgeon wouldn't even consider it until I was more stable. My current neurologist only treats neuromuscular and is much better at evaluating cases on an individual basis.

TexasRose--That sounds a bit like what happened to me. I was complaining to my rheumatologist for years about being extremely fatigued or not being able to situp and he'd tell me thats part of arthritis. Even though he normally had the world's best poker face, I could tell from his expression when he was reading the neurologist's report, that everything just clicked.