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Member
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Join Date: Oct 2006
Posts: 371
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Member
Join Date: Oct 2006
Posts: 371
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Awe, Alley I'm so sorry you met up with so many uninformed neuros, but it sounds like you needed a specialist in Neuro Muscular diseases. Not all neuros are equal, and its very important to find a neurologist who has experience with MG. It's unfortunate that the neuro who did the antibody test didn't trust the results. One can have false positive, or false negative, and one can also have the antibodies show up one time, and then when the MG isn't in a flare, it not show up.
You're not one of the ones I was referring to, it was actually one in particular really. Once a while back, no one here, there was someone that had some MG symptoms, and many symptoms that were not MG. This person went to some really good neurologists who were very informed about MG. They told her that she didn't have MG, but probably something else. She refused to believe them, and to this day, is still searching for a neurologist who will say she has MG. So actually it was she about whom I was thinking.
I thought it so sad, and I did and do believe she has something wrong with her, and is desparate for a diagnosis, but I really personally believe it's probably something else.
I do have a wonderful group of neurologist, who are indeed very informed about MG. I know I'm blessed, and I know not everyone has that blessing near by. What I would reccomend is for a person to get a hold of their local MDA, and find out who has experience in MG. (doesn't have to be a neuro, sometimes it's a rhuemotologist (sp?)
I wasn't trying to be offensive, or trying to offend anyone. I just don't want people wasting valuable time going in the wrong direction. I want them to feel relief as soon as possible.
Much Love Lizzie
Quote:
Originally Posted by bluesky
However;I've read posters in the past, say over and over again, how this neuro was awful, and after seeing 10 different neuros who all say the same thing, " I don't Have Myasthenia, so I don't want to go and find another, they're all bad" Well, just maybe the person doesn't have MG, but something else that has many of the same symptoms. At some point we do need to understand that maybe it's something else, and just maybe we need to trust that the experts really do understand, and just honestly don't believe the person has MG.
Lizzie: I'm probably one of those people that you're referring to who went to several different neuros, stubbornly insisting that they were wrong and I was right.  I understand about what you're saying when you say that people need to keep an open mind about their diagnosis. I absolutely agree that that can keep people from discovering what's really wrong with them. I worry sometimes when I read some stories on this and other forums that people are cutting off other possiibilities. On the other hand, I just want to point out that neuros can be wrong. Call me stubborn, but I'm glad I persisted until I finally saw an mg expert who was able, in 5 minutes, to give me an mg diagnosis. I went to 5 neurologists who all told me that I didn't have mg, despite having two positive antibody tests. BUT, they also told me facts about mg, actually absolutely insisted on facts about mg, that I knew were just plain wrong. Things like: there are a lot of false negatives with the antibody test, you don't need a cat scan because mg has nothing to do with the thymus or any type of cancer, mg symptoms never change - once you get a sypmtom it's constant and never gets better or worse, SFEMG is not an appropriate test for mg, SFEMG is an appropriate test for mg and those results trump antibody tests and only need to be done on one muscle, if you have side effects with mestinon than that's a strong indication that you don't have mg.
I was discouraged, scared to death, dismissed, sneered at, and almost everyone I knew thought I was crazy. But my philosphy was that when I met a doctor who knew as much as anyone with a good two hour google search under their belt and that doctor told me that I didn't have mg then at that point I would believe it. But until then I wouldn't give up.
So yes, I completely agree with you. It's important to keep an open mind, listen to the neuro, consider carefully. But if someone really believes that they have a disease and really after very careful consideration and research still believes then they need to listen to their own instincts. Keep trying and don't let yourself give up.
I have a feeling that you live in an area with very good neuros. I think that's wonderful - I wish I did!!!
Rach: I wish you the very, very best. I hope that they can find something in your upcoming tests. From what I've read recently, I think it's a good idea to wear yourself out, even though it's going to be difficult. Good luck!!!!!
Ally |
Last edited by Maxwell'sMom; 11-13-2009 at 01:39 PM.
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