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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-05-2013, 04:37 AM | #1 | |||
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BTW, this is the reply I wrote to a fairly hostile e-mail I received from one such "bright and promising" young neurologist.
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01-05-2013, 08:45 AM | #2 | |||
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Even if a problem is "all in our heads" or "psychosomatic" or "the crazies", it still has a cause. Psychiatric problems are real problems. When I was told that my MG was just a case of me being crazy, I was not referred to a psychiatrist for diagnosis. I was told to find a counselor. I wonder if a counselor would help diabetes, heart attack, and stroke.
By the way, for years I have had sleep issues. I have had nightmares and/or insomnia, and once I did sleep, I woke with severe headaches. A sleep study did little to reveal the cause. It only resulted in me getting drugs that made me worse. It is interesting how a little mestinon popped right at bedtime drove out my crazies. I sleep like a baby.
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01-05-2013, 09:19 AM | #3 | ||
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We highly appreciate your sharing of opinions old and new, and the really fascinating quotes, Alice
I fully agree with that, and they also need to be diagnosed correctly. Hope things are going better with family and health today, and thanks for sharing your view on the effects of stress, Celeste. So does anyone know? Do psychosomatic illness symptoms resemble those of MG? Anacrusis |
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01-05-2013, 10:06 AM | #4 | |||
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MG is in the differential diagnosis of conversion/functional disorder. |
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"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-05-2013, 10:17 AM | #5 | |||
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Can conversion disorder have a radical response to treatment due to placebo effect? Can this go on for years? Also, there comes ptosis. I can imagine my legs week. I can't imagine my right eyelid to stop working correctly while my left one works happily along. Is this the deciding factor that makes the differential diagnosis?
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"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-05-2013, 10:58 AM | #6 | |||
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I have a negative SFEMG and a negative acetycholine. On this basis MG has been ruled out in my case. Clearly in the last weeks I have developed symptoms that are not consistent with MG. However, since these new symptoms haven't even been assessed I wonder how they can know whether it is related to what-ever-it-is or not. I may be a nutter. There is no way of me - or anybody else - truly knowing the answer to that question. I have no acute 'emotional' problems that I'm aware of, but then, I might be repressing them. How can anyone ever know? I was assessed by a psychiatrist right at the beginning of my being ill three years ago. He advised I didn't need any therapy and stated that I was clearly managing remarkably well, noting that he could not identify any psychiatric issue. A psychiatric diagnosis is a diagnosis of exclusion; I have a negative SFEMG and acetycholine so I don't have MG. But if I have a negative psychiatric assessment, that doesn't seem to count for anything! I'm still a nutter. Sometimes I think I MUST be mad because they don't find an answer. |
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"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-05-2013, 11:29 AM | #7 | |||
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I think everyone is a little bit insane in one way or another. Some of us also have other health issues, such as MG.
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"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-06-2013, 07:22 AM | #8 | ||
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Wishing everyone a wonderful day Anacrusis |
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"Thanks for this!" says: | southblues (01-06-2013) |
01-07-2013, 07:51 AM | #9 | |||
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As I understand (and I may be wrong because I'm not qualified in these things), the main positive neurophysiological sign for weakness of a psychosomatic nature is something called Hoover's sign. This is when the physician asks the patient to lift a leg, which may appear weak. However, when the physician then asks the patient to lift the opposite leg he cups the heel of the other foot to see if pressure is exerted downwards, thereby revealing the weakness as inconsistent. Whether or not this feature may appear in MG or other diseases I do not know. But I do not this is one of the main diagnostic signs for psychosomatic,as opposed to other forms of weakness. This is one of the things I find puzzling about my diagnosis. I have never been able to lift my leg when asked. On first attempt my leg does not rise from the bed, I immediately begin to grip the bed/walls with my arms and body to try to exert pressure from other parts to try and lift the leg. I am guessing I wouldn't be doing that if I were able to lift the leg by merely exerting pressure downwards with the opposite heel. In fact, I don't recall a physician ever cupping my opposite heel in that way. [/QUOTE]
I think this is also a complex question, because it is a lot to do with how we perceive our symptoms. Let me give you an example. I thought for a long time I had some kind of postural hypotension. I can't stand up very long and doing so causes me to faint. Equally, I have to keep my feet raised at all times otherwise I get palpitations. But then I began to wonder whether the same set of symptoms, from a different angle, could be explained by muscle weakness. Standing up the muscles get gradually weaker and give way. Sitting with you feet not raised takes more muscle action than sitting with them raised. Does this get me any further to classifying what it is? No. But it makes me realize that how I think about my disease has an impact on how I understand the underlying process. [/QUOTE]
From what I read I see a lot of people given functional treatment simply don't respond or see an improvement. I think it's about 50/50. I dare say there are many patients who are suffering from a repressed psychological problem that manifests itself physically and that can be managed through CBT, graded exercise and therapy. My question is, as somebody who has already completed courses in CBT, and who maintains a good lifestyle through diet and exercise, and who has ALWAYS been very open in talking about thoughts and experiences to the extent that nothing is left buried, who has a strong network of friends and family who are supportive without being overbearing or threatening their sense of independence -- when the patient is doing all this, and is STILL getting progressively weaker, I wonder what they will offer?!? I'm looking forward to finding out on the 15th. [/QUOTE]Wishing everyone a wonderful day [/QUOTE] And you too Anacrusis. Thanking you for your inquiring mind and thought-provoking questions in helping me to understand this disease. Wild_cat |
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"Thanks for this!" says: | Anacrusis (01-08-2013) |
01-05-2013, 10:41 AM | #10 | ||
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