"First of all, I think that people who are very sick can elude the testing which is contingent on the convenience of the neuros' calendars and timelines. I have never been able to be seen when I was at my sickest and most desperate, and frankly I find the whole business appalling and absurd.

When I arrived here I was not as sick. I was still trying to run once I started taking steroids. I ran two marathons, though I was very sick doing so. I would have intermittent ptosis and diplopia depending on what I had been doing. My tests have always been negative, except one suspicious repstim. I got progressively sicker but tests have not been repeated. I had magic response to Mestinon and ice test worked at home. My arms are too tired to continue typing, but be all over mild symptoms. You can get much sicker if you are denied aggressive treatment."

Your story sounds somewhat like mine. I was trying to get a diagnosis since 2007 when my first symptoms started. I went from doctor to doctor, neuro to neuro, test after test (all negative of course). Finally, had an emg done over a year ago and the neuro stated my results were positive BUT he didn't want to diagnosis me with MG. I left there a little relieved but at the same time more frustrated. All these years and doctors I certainly can feel your desperation. They all basically thought I was crazy without using that word, but I know my body Im not the same person either. That last time I saw my neuro was over a year ago, I was only experiencing my eyes not opening in the morning, difficulty swallowing and some shortness of breath. Since then my throat has gotten progressively worse. I've been dealing with it, "living with it" I guess. But now I have been choking, my throat feels like it's touching, Im always exhausted. I also have dry mouth, tongue feels swollen. I finally called and have an appt on Monday. Haven't been on medication but am willing to take it if neuro finally thinks I have mg for sure. So long story (sorry) short, I understand completely where you are right now. Keep your chin up, will be thinking of you. Your daughters are beautiful, I bet that's what keeps your going....like my son does for me.

Don't feel bad. If there is something wrong, someone being worse off doesn't make your symptoms invisible. No matter how bad off someone is, there is always someone else worse off. It just does no good to compare yourself.

A decade ago when I started having trouble my symptoms were milder. Well, not so much milder but less frequent and controllable to a point with rest. I could manage to do things in life if I took it easy for days between activities and altered my surroundings (touchpad appliances so I didn't have to struggle to turn dials, use a cart to bring in groceries, etc.).

I got thorough work ups and was even sent to Stanford. Everyone acted like I was lazy and depressed. Well, I couldn't move much and my face and eyes were droopy. One doctor told me maybe they'd never figure it out and I should just try to live with it. Nobody would believe me saying I had to crawl up the stairs. I had no support anywhere and was so defeated I gave up. My world shrank. Once in a blue moon I'd have what seemed like remission, and I'd make plans to go back to college, start job hunting, start a social life, only to have all thAt activity bring my symptoms back and my world crash around me.

In my worst times I would have to stop something like cooking dinner, and curl up in a chair barely breathing. I'd be motionless for hours or pass out asleep, and that eased my breathing. I'd have to stay in bed or be a couch potato for days to bring myself back. It was too scary to go to the ER when I'd been branded a nut case, and I many times thought I'd have to risk getting worse from the exertion of it if I thought I was nearing stopping breathing altogether.

So I had in my mind and experience that nobody could help me and I could just manage to live a basic existence by easing my symptoms with rest. Two years ago I needed emergency surgery that turned into a nine day hospital stay from complications. My symptoms since then have spiraled out of control. I'm terrified of anesthesia because of what it did to me. I've been to the ER five times since then solely for breathing trouble, with this last time being admitted for a week. During that week I thought I was going to die several times because instead of helping me breathe they kept exhausting me with tests. One night a neurologist popped into my room, and a few hours later I was given mestinon and within twenty minutes I could breathe and walk and my eyes weren't heavy. And then it wore off and it all came back like a ton of bricks. They watched me respond dramatically to this pill for almost three days and sent me home with Myasthenia Gravis on my discharge papers. I'm so bad now that I cannot breathe without mestinon, and I would have to repeatedly go back to the ER if I didn't have it. I'm still not technically diagnosed and am working on that now.

I'll just stop there because what I'm trying to say is that MG is something you should never think you can control. Find out if you have it. Use the wealth of information on the web to make sure you rule it in or (most hopefully) out.

We sure do worry, especially in the beginning stages.
I had mild MG at first with symptom of only a droopy eye and then progressed to simple tiredness that felt like I was running on empty. My antibody test and the nerve...whatever test showed up positive.
I just got more tired and more tired as the months went on.
I began resting all week ends and didn't want to drive very far such as to my moms about 60 miles away.
I wish you the best...and feel free to share your ideas, thoughts and feeling. I trust we may have all experienced them ourselves. At first all I wanted to do was talk about the crazy, crazy disease with everyone I was with. I talked a lot because it didn't make any sence. After I found this group I could be more at peace and didn't feel the need to talk so much to family and friends about it.
Take careAnn

TaraU -Thank you for your story, What is it with these Dr's? If you don't have a positive test you can't be diagnosed....if you do have a positive test they decide not to anyway??? I am so sorry that you are struggling but I am glad your Son brightens your days as my girls do for me - thank you. Good luck with your appointment, let me know how you get on if you can.

Maymayknits - thank you for your story! It sounds like you've well and truly been through it with this illness! I completely understand what you mean - my world has also shrunk, the only relief I get is from rest but quicker and quicker the symptoms return making those periods of relief shorter and shorter. I feel I have modified my live to keep the symptoms as minimal as possible and I am now scared of Dr's for fear of disbelief! I finally have my test date through for the 16th September, so here I am, my last chance for answers before they completely write me off.....I am not sure what to wish for, I just want a chance to live my life again. Good Luck with everything, I will be thinking of you.

Thank you Ann, I know exactly what you mean, it is so nice to be able to come and talk to people who truly understand. I am lucky to have an amazing partner and supportive family and friends but they can only understand so much and it helps to talk here and not feel the need to talk to them so much....I think even they would wear tired of my constant questions and thoughts!! Thank you for veing so king and welcoming!

Thank you once again to you all.
Eve.x

Eve, if there is one thing this journey has taught me, it's to be bold and say out loud to myself and someone else that Dr. X, Dr. Y, and Dr. Z are detrimental to my health and cross them off my list. They may be good for certain personalities or easily memorized textbook cases, but not for me. If one disbelieves you, shake it off and keep going.

Finding the right doctor makes a tremendous difference. Quite by chance I ended up with a new primary who was on my side fighting for me without me even saying I needed it. She's never had a patient with MG but suspected it right off the bat. And if she doesn't know something she says so and tells me she will research it. No ego, all help. And she thinks she's just doing her job, bless her.

I wish you all the luck in your journey.