I had a smile on my face three miles wide.

^ that is how I felt when I was DXed. Now as for the O2, I feel he is wrong about that, I have a lung Dr because of breathing problems and he is the one who said I need to have my MG checked because he felt a lot of my breathing problems were MG related, even though I had been in remission for so long and well, he was right to a point as my MG did come back.

I am so glad you found a good MG Dr. as we all know they are hard to come by.

Hey Shari,

Mestinon SR is mestinon slow-release...They come in 180 mg tablets and are slowly released into the system over an 8-hour period...They help a lot with the morning weakness- ask your doc. about it!

Nicky

Ally,
That is WONDERFUL that you have a diagnosis! I too agree with Annie that a neurologist is not the person to make the call on the breathing/oxygen issue. There is a specialist that deals only with the breathing and the call should be made by this doctor.

I really dislike how doctors look at everything so black and white and sometimes refuse to consider the grey in between. Weakness with MG is different from person to person and from day to day. Many factors affect symptoms.

I have a "very good" neurologist. He does not specialize in MG or neuromuscular diseases but he is still a very good neurologist. That being said, he did not know that heat or my period could make my symptoms worse. I take information to him sometimes and we "work" together on the best treatment plan for me.

I truly feel for you and trying to get to a place where you and your kids are all healthy and happy. Steroids are helpful but do have side effects. As do all drugs but you need to research it and come up with a plan that is best for you.

Take care ~ Melanie

I saw the MG specialist this morning and she mentioned that but I always worry about slow release medication for some reason. I am a little paranoid about having too much in my system and that goes waaaaay back when I was first diagnosed 15 years ago. I had a crappy crappy neuro who said, you have Myasthenia Gravis... take these pills and out the door he went. The dosage was too much for me and it was an experience I do not want to remember.

I guess it is slow release though, so it wouldn't end up being too much. I'll ask my neuro about it when I see him next week.

Rach,
I am stumped as to why I haven't started meds yet too! I have had others ask that same question too. If they don't put me on it tomorrow I plan to find out why. I am so relieved to hear that there are others out therwho wake up weak. I was beginning to fear I had something else going on too.
Kendra

Hi Nicky,
Thanks so much for the post. I have really been worried, like you were that something else was going on with me.
Thanks too for the input on the EMG!!! I'm so ready to get it over with!
Kendra

Shari,

Actually, you're totally right to be worried about the time-release...I'm a bit uneasy about taking it myself, and don't always take it for the reasons that you mentioned...Sometimes, too much mestinon can be released...It's sorta unpredictable and doesn't 'release' consistently...I only take if I have to be somewhere early in the morning where I have to talk...I always feel apprehensive when I take it, but *knocks on wood* everything's been okay so far with taking it at night...No overdoses yet lol

Kendra,

No prob.! MG is such a strange disease...I think that some people might be weak in the mornings because they might move around a lot in their sleep, either through clenching the jaw or just flat out being restless...I really can't figure out why this happens, but I know that it must be the MG since the mestinon SR seems to help me wake up with strength...Don't worry too much about the EMG- it doesn't hurt at all, unless you're very squemish about needles...I've gotten so used to them from getting so many tests done over the last few years that it wasn't a big deal...It might have also been because I was so eager to get a diagnosis and/or being preoccupied with have something 'worse.'

Good luck, girl!
Nicky

Thank you everyone for responding to my post. And thank you, thank you for sticking by me and supporting me through all this. There have been many times since I got the positive antibody results last January when I felt like my sanity and my hope was hanging on by a thread. But the thread was strong and enduring - it was all of you. There were times when I think literally no one in my life except people on this forum believed me and didn't think I was crazy. I just can't thank you enough.

I don't know what's going to happen with me now. I fought and fought to find out what I had and then I fought and fought to get the positive antibodies acknowledged and to get a diagnosis. It seems like I have to fight and fight to get just an inch in this battle. I thought my problems would be over when I finally got a positive lab result on a test. Then I thought my problems would be over when I got the diagnosis. Now the neurologist gave me the diagnosis, but he doesn't want to give me steroids and I feel like I'm still not anywhere near to getting the help I need. Mestinon helps enormously and I'm one of the lucky ones without side effects, but it still leaves me with needing a lot more help. Okay, I'm gonna take a deep breath and quit whining.

I'm exhausted and worn out but I wanted to reply to everyone's thoughts.

Erin: You are such a sweetheart! I wonder if you realise how much you do for those of us lucky enough to have you as a friend. I know you have really, really struggled with a particularly nasty form of the disease, but you still find it in you to reach out. I'm with you on the steroids! I'd love to try them. We'll see, I'll keep pushing.

Annie: The first sentence of your reply had me grinning for 10 minutes. I have told so many people what your response was and they all laugh. As for the rest of your reply - I actually tossed and turned all night thinking about your comments on pulmonologists. NO, you're right, I've never had an oximeter put on me at a neuro's office. It seems so strange that the specialists have such narrow vision, but I woke up the next morning and realized you're right. It makes perfect sense in the crazy world of medicine.

JCPA: Yah, it took six neuros! It's too funny that you pointed out the statement on the mg site. I had that article highlighted and tabbed along with articles in 2 other binders that said basically the same thing which I took along to the second neuro, a (supposed) neuromuscular specialist at the local teaching hospital. I must have been driven half mad by that time because it doesn't make any sense what I did. But I sat there trying to show him the most basic facts of mg after he told me most outrageously stupid and wrong things about the disease. Why would I try to convince a doc instead of finding one who knows what they're talking about? I don't know!!! He got so angry he tried to get me to leave and then stopped talking to me. I'll laugh about it someday, but it was traumatizing at the time. He was convinced that the antibody test was loaded with false positives and didn't mean anything, if you have side effects of mestinon it's strong evidence you don't have the disease. Oh, I could go on and on. I have a list of 15 serious errors that he made somewhere around here. Anyway, he absolutely insisted there was no relation to cancer whatsoever. Denied the whole Lambert-Eaton thing and seemed to have never heard of the thymoma connection. I had to absolutely BEG him for a thymus cat scan. He was adamant that I was crazy and it was totally unnecessary.

I do have breathing problems. That seems to be what is most debilitating to me. Also, a severely drooping eyebrow and sometimes the entire right side of my face will become very weak and fall down and I'll look like I'm having a stroke. I have some speaking problems, but not much, mostly when I'm really stressed. The worst was ironically after I saw yet another neuro and he shrugged his shoulders when I told him how hard I struggled to breath and dismissed me after 10 minutes. I sobbed in the parking lot and then my tongue went on me. I'm sure I was a lovely sight to behold, sobbing and stumbling over my words. Geez, why can't i get the tall and skinny disease?!?

Pat: Thank you so much for your kind thoughts!

Kendra: I'm sorry for your diagnosis but glad you're getting help. I don't know why neuros deny that fatigue relates to mg when it seems to me we all suffer from terrible fatigue. It would make sense to. As for the morning weakness, that is often a busy and stressful time. I think it's probably my most active time with making lunches and breakfast and getting dressed and taking care of the dogs. I usually have to go back to bed after my boys leave for school! Plus, showers absolutely wipe me out. Since we blow dry after showers, I think that's explanation enough.

Rachel: I know the nightmare you're living with trying to get a diagnosis. I think about you a lot, you'd be surprised. All I can tell you is it's taken me eight years and many bad experiences so don't give up!!!! You're brave and you're a fighter. You'll get this figured out.

JoanMarie: That is so interesting that your pulmonologist caught it this time around. Do you mind telling me: what pulmonology tests caught the weakness? Which ones were normal? I live in fear that I'm going to pass all the tests the doc ordered and I'll be doubted again.

Melanie: thanks for your thoughtful points. I think you're correct about the right speciality making the right call. I just had never, ever thought of it that way before.

I think you're much better with a neuro who is open minded and willing to learn (not to be snotty but I didn't know there was such thing) rather than a super neuro who thinks he/she knows everything. Especially with this disease which is so variable between people and even over time with one person.

Whew. Okay, anyone who got through this entire reply gets a prize for persistence. I hope I haven't made any mistakes because there's no way I'm going to proofread it now. Thanks again everyone!!!!

Ally