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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-03-2015, 05:31 AM | #1 | ||
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By Dr Michal Haran
http://www.ipus.org.il/conferences/%...cular-disease/ (PS I am finally myasthenia free except when using antibiotics) |
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"Thanks for this!" says: | anon6618 (09-04-2015) |
09-04-2015, 07:58 AM | #2 | ||
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Quote:
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09-04-2015, 08:23 AM | #3 | ||
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Anacrucis, I'm so happy to hear you're better!!! I'm better, too. I have had only very mild symptoms, and sometimes none, for 15 months now, and I'm off all drugs. Abby |
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"Thanks for this!" says: | anon6618 (09-04-2015), pingpongman (09-04-2015) |
09-04-2015, 01:22 PM | #4 | ||
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Thanks for sharing! **
Anacrusis, so good to read you're symptomfree most of the time! I don't understand the title, it doesn't really come back in the presentation. I do however found strength in what she was saying. I have had, and still have some times, doubt in my own symptoms. Because of the fluctuating muscle weakness, especially of the respiratory muscles. It helps to hear other's with the same disease have the same problems. It's pretty much the same everywhere. Diagnosis: "Your disease may be very severe now, but with treatment you'll be able to life a full life again, without many symptoms!" Oh joy I wish I had MG! After years of many, many drugs, wheelchair, respiratory help, infusions and side effects you'll just have to live with even though there are too many times you can't handle it anymore, it's: yes, but your's is special, it doesn't fit the book, it's complex, it's different. That's just wrong and may cause unnecessary issues which are easily avoided. I wish doc's would stop thinking MG is a peace of cake or a mild disease. Anyway, like the presentation, very informative. Last edited by Chemar; 09-07-2015 at 06:38 AM. Reason: administrative edit for member privacy |
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"Thanks for this!" says: | juliejayne (09-05-2015) |
09-07-2015, 04:37 AM | #5 | ||
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Oh I have no doubt that the title or that the share is quite imperfect as the nature of myasthenia and more often than not, life itself.
But there it is....an absolutely outstanding NM presentation & testimony that I would imagine is inspiring not only to those with rare neuromuscular diseases, to those with other types of diseases but indeed to anyone. I guess there are times when you come across those who give inspiration to others for just a moment, those who give longer lasting inspiration and then there are those who give hope & inspire you for a lifetime and beyond. This must just have been one of those times. This is the only thing I have worth sharing at the moment Take very good care, Anacrusis (PS I recognize many here! I think of you often! I am grateful for the time I spent here and will always be in so many very different ways - thank you) |
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09-07-2015, 12:54 PM | #6 | ||
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Thank you for posting this video! It gave me hope, in that even a physician can have trouble getting a diagnosis and finding appropriate treatment for her myasthenia gravis. Still, she finally has found some treatments which are helping her, and it's good news. It shouldn't be this hard for people to get diagnosed. Hopefully things will get better with time, and treatments will improve as well.
Take care, Erin |
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