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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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That is why a patient that had a very typical clinical picture of MG from day one (there are very few diseases that can cause such changes in muscle strength from one day to the other, in the way she describes) required respiratory support due to her illness, responded to achetyl-choline esterase inhibitors and plasmapheresis, but probably did not have a diagnostic SFEMG or antibodies to support this diagnosis was not treated as MG by any neurologist. a normal SFEMG during such severe weakness "rules" out MG. is there anything in the medical literature to support this notion? no, there isn't. in fact there are very few studies done on SFEMG in seronegative or MUSK patients and those show that doing a SFMEG is about as good as tossing a coin. can myasthenic weakness be without abnormal transmission of the electrical signal at the NMJ. of course it can. there are so many things that can go wrong after that on the way to proper muscle contraction. myasthenia is not one disease, but many, each is very different in its cause, clinical course and response to treatment. I believe that there are many patients like chloe, but only a few that can articulate their experience in such a way. many are treated in this manner, but are not able to fight it, and just succumb to their illness and the way they are treated. I believe some probably die without us even knowing about it. wasn't she very near to that? possibly internet support groups like this one (that did not exist when she was struggling with her illness) may change some of this, by giving such people hope and support and feeling less isolated with their ordeal. but, without knowing what your illness can be, how do you find one? she is not a physician and probably never heard of MG during all those years. when I hear those horrible stories, I can't avoid thinking how fortunate I am to be a physician and be able to take care of myself, and although I have my share of humiliating experiences (which in a way are harder, because those are my colleagues), I have taken care of my crises at home, where I don't have to face those idiots, and can manage my illness in the way that I think is best. I remember how relieved I was when after one of my more traumatic hospitalizations (the last one in a neurology ward, as I promised myself that what ever happens I am never going to be hospitalized in a neurology ward again after that), when having severe shortness of breath I was surrounded by my loving family who quickly put my respirator mask on, and I thought how great it was that no one was trying to measure my VC (only to document it on the chart and do nothing about it) or tell me that I am "doing" this because I do not want to go home (as I was home). A while ago I asked the head of our ICU (who has been of tremendous help, like almost every physician who is not a neurologist or has not been influenced by them) under what circumstances it would be dangerous for me to be at home and I would require intubation and not NIV. he said that he thinks this is not likely to happen, as I have learned to master my illness so well. recognize early signs of respiratory compromise, use my respirator before further deterioration occurs, avoid aspirations when I have difficulty swallowing, and mange to overall keep a reasonable caloric intake. every now and then I make the mistake of trusting a neurologist again and thinking that he is going to be different, he is going to be able to think out of the box, he is going to understand that atypical MG is still MG. but, until now I have always been proven wrong. none of them was capable of that, or of understanding the respiratory manifestations of this illness, in a patient that has learned to live with it, using intermittent respiratory support. alice |
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"Thanks for this!" says: | Annie59 (01-24-2011), Needananswer (02-12-2014) |
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Annie59 |
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Abby, Thanks for posting this. I ordered the book too! I'm someone who has a typical presentation of MG, but do not have any positive tests. Although I have had a good response to Mestinon.
I think those who have atypical presentations or those who don't have positive tests really confuse neuros. I'm thankful that my PCP said that he thought I had MG based on things he noticed on exam, my ptosis, and my symptoms which "screamed MG". Thanks again. |
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I just got my book but havent gotten into it. Too sick and vision worse.
AnnieB3 I did skim your excerpt. The piece about missing record segments reminded me of trying to get my birth records for my youngest daughter. I beleive she was not breathing when she was born, in some real distress.I know for a fact that I was torn from stem to stern thanks to his way to generous use of pitocin to get him done with me. I asked to see her becaue I heard nothing. I actually begged fianlly. I was refused. They took me to my room and expected me to sleep not knowing if my little girl was all right! I was there a long time being sewn up and never heard any baby sounds. There was alot of activity around her too. Well I had my payback so to speeak. When the doc came early the next morn to tie my tubes I said NO. Honestly I wasnt gonna let that guy touch me again ![]() ![]() When I requested this record it was missing. After I moved to where I am now I discovered taht he had left town, that doc, after a bunck of lawsuits. I think this is why my daughter has Epilepsy. Annie59 Quote:
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this is perfect timing~that is exactly what i feel like. today especially after that appointment at UCLA. i am going to get a copy i think it'll be inspirational.
thank you. Quote:
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#6 | ||
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The book "It's Not Mental" by Wolfson (link here: http://itsnotmental.blogspot.com/) is one more new story like that. Talk about "Prejudice in a Medical Diagnosis"!!! And all over the Internet people have their horror stories. |
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"Thanks for this!" says: | craftyRCC (01-21-2011) |
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#7 | ||
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Just wanted to bring this thread forward for Mycha's mom
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"Thanks for this!" says: | minalhansen (02-13-2014), Panorama (02-11-2014) |
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#8 | ||
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Sandy,
Thank you for bringing this thread forward for me. I just went and previewed the book on Amazon and reading the preview portions is like observing my daughter. My daughter too is nearly quadrapeligic and told it's psychiatric. Right now Johns Hopkins and Duke are both reviewing the 70 pages of tests and med records they requested to see if they believe they can be beneficial in evaluating/treating Mycha. Just praying. Mina Hansen |
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"Thanks for this!" says: | sandy56 (02-12-2014) |
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I really hope she gets the help she needs. She has the antibodies. That is a diagnosis.
__________________
Celeste |
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"Thanks for this!" says: | minalhansen (02-13-2014), sandy56 (02-12-2014) |
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I was told by multiple doctors that I was a poster child for depression to which I replied, "I wasn't aware that depression causes double vision and slurred speech".
One physician and friend of family (in fairness he doesn't specialize in MG) was so adamant that this was all in my head that he challenged me by saying, "well prove it to me and just try an SSRI". I left there feeling so outraged I thought I was going to explode or implode - either would do. I collected myself and told him at a later date that his assessment couldn't have been further off and his hubris was deplorable. He surprised me and apologized. Like most of you, a dx for me was much better than the madness of living in fear and uncertainty. For all the undiagnosed patients out there, I send you extra positive energy and hope for answers. |
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"Thanks for this!" says: | minalhansen (02-13-2014), sandy56 (02-13-2014) |
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