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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, 04:09 PM | #21 | ||
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I did read somewhere that it could take up to as long as 8 years to diagnose a female with atypical MG as compared to only 2 for a male. If this is true and given that MG is already more prevalent with the female population to start with, then why would that be?
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01-05-2013, 04:51 PM | #22 | |||
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That is unbelieveable and should not be!!!
Mike |
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"Thanks for this!" says: | Anacrusis (01-06-2013) |
01-05-2013, 10:55 PM | #23 | ||
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Grand Magnate
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A well-known MG expert said in a conference I attended on MG in 2004 (yes, an MGFA conference) that it takes an average of one year for a man to be diagnosed with MG but an average of seven years for a woman to be. I don't know what was more disturbing; the fact that it takes that long or the fact that he seemed to be accepting of it.
If our world does not stop treating women like second class citizens, we women may bring hysteria to a whole new level. This has to stop. Last edited by AnnieB3; 01-05-2013 at 11:17 PM. |
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01-06-2013, 07:22 AM | #24 | ||
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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 | #25 | |||
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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) |
01-07-2013, 12:13 PM | #26 | ||
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Cate |
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"Thanks for this!" says: | Anacrusis (01-08-2013) |
01-08-2013, 10:31 AM | #27 | ||
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Sorry I didn't read the entire text you wrote, but I read most of it and disagree to a large extent. Mind that this is coming from someone who was told for about 5 years that my illnesses were psychosymatic and then undiagnosed for a couple years before being misdiagnosed for 5 years. I think psychosymatic illnesses are real and can look like almost any disease. There are studies to this effect (one case study on hysterical blindness springs to mind). The problem is that its too easy for a doctor to look at a real illness they don't understand and call it psychosymatic. I completely understand where you are coming from and agree that doctors need to rule out everything before calling something psychological, but just because we got a raw deal doesn't mean others out there don't need some kind of psychological help which will alleviate their symptoms. |
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"Thanks for this!" says: | Anacrusis (01-10-2013) |
01-08-2013, 11:34 AM | #28 | |||
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what kind of psychological help and how does it alleviate their symptoms? How do you differentiate between a patient with a "real" illness (even cancer) who does better with emotional support and a patient with a "non-real" illness who does better with emotional support? Quote:
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01-08-2013, 11:54 AM | #29 | |||
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depending not only on personality but also which type of doctor you visit. Take my pick......! When at the physiotherapists my answer was said to lie with a neurologist When at the neurologists I was told to find my way to a gym! When visiting the doctor the diagnosis was supposedly to be found at the psychologists When at the homeopaths, my answer must surely lie with the mineral supplements offered compatible with my symptoms When at the alternative doctors the only path for me appeared to be the one using energy healing When I, as a īdiagnostically confusing patientī Quote:
But when I traveled to a different country where new truths providing better alignment could be accessed via different medicinal cultural perspectives an MG researcher & neurologist told me the answer was atypical seronegative myasthenia going into remission....I had come full circle back to my own original suspicion all those years ago..... In the end it really is we who know, - or at least I should say we know when something isnīt quite right about anotherīs perception of how we are experiencing our own symptoms and what they might mean. wild_cat,..…thank you for your reply, you inspire me to remain truly inspired - no matter what Anacrusis PS BackwardPawn, I donīt think anyone means folk shouldnīt get psychological help when they need it, not at all. I think that itīs just the diagnostic phase like you, that we are a little frustrated with. |
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01-09-2013, 06:36 AM | #30 | |||
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I have often questioned whether there is something in the way I come across that leads physicians to think this, rather than something else. I'd be really interested to know, if that is the case, what it is. I agree with you that there may be a certain cultural bias towards dishing out a psychosomatic diagnosis. Certainly when I was in Iceland no doctor for a second suggested my symptoms were psychosomatic. It's just unfortunate it would have cost me the price of a house to receive assessment and treatment there. |
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"Thanks for this!" says: | Anacrusis (01-10-2013) |
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