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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | ||
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Junior Member
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No kidding about the mind going blank. As much as I hate to say it I find my neurologist attractive. She isn't the most beautiful woman I've ever seen or anything..but the fact that she knows more about my brain than I do is sorta hot, lol.
I always forget what I want to ask her about..so I started writing stuff down too. I see her every 3 months so a lot happens in that span. Something bad a week after my appointment is easily forgotten, but if I write it down it's a lot easier. Keeping a journal of symptoms in relation to your day is important too..I know a lot of people with MS have success with dietary changes(at least what I've read on the boards), so that may be something you should jot down too. |
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#12 | ||
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Member
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Hi guys, I just wanted to add my 2-cents too.
Erin - I totally agree about the lists! My husband teases me and says I have lists to keep track of my lists. They are a necessity though - otherwise I think I'd lose my mind. The other night I was really out of it and called the toilet the oven (maybe that's why my cooking is awful, ha ha) and then proceeded to use my husband's toothbrush without even noticing it! So weird. Gdbyrd - I can empathise with the "hot brain" thing. I was diagnosed when my husband I were both in university. My husband was taking a neuroscience course and had to explain to the entire family what was going on with me. I still turn to him when people need an explanation. It was really awesome that he could understand the inner-workings of my cholinesterase receptors!! Kristie - welcome to the site, I'm sorry you are struggling to find a diagnosis that fits everything. When I read your posts all I could think is "She needs to see Dr House." Too bad that's only a tv show! When i was diagnosed my neurologist did a really simple test you could do at home. It's not definitive, but it might help you if you get a result. I call it the chicken test and you'll need your partners' help. Hold your arms up (fists in by your chest and arms folded - shoulder height... hope that makes sense - it's hard to explain in words). OK now that your arms are up get your partner to push gently on your elbows, trying to push your elbows down towards your sides - you fight to keep them where they are. They should not use too much force, just enough to try to over come you. They shoudln't be able to at this stage. Next step is the chicken step - flap ONE ARM 20-30 times until it starts to feel a bit tired. Now put both arms up again and get the partner to push again. The arm you've been flapping should be fatigued and you won't be able to support it even trying your hardest. You can use the same type of test for your legs (lifting off a flat surface while lying back), or eyes (looking upwards for an extended period of time and looking for a droopy lid). I hope i explained all that alright. I remember when my neurologist first did this - I cried because i was so grateful that he could see what was going on. Anyhoo, I hope this helps! Stick in there - I'm sure you'll get your answers! ~Kathy |
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#13 | |||
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Member
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Hey Kathy I thought I was the only one who does the chicken dance!! I almost get into a fit of giggles when my neuro asks me to do it, cos I feel like humming the music and doing the rest of it, but he "would not be amused!!" we do have a good doctor patient relationship tho, which I should have after 6 years.
All the tests you mention are great for testing for weakness. Another good test is laying flat on the ground and trying to sit up, no assitance, no bending knees, I do this when I think I'm feeling bad, and it confirms it. hope this helps a little
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Outside of a dog, a book is a man's best friend. Inside of a dog, it's too dark to read. Groucho Marx |
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#14 | |||
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Senior Member
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I know how you feel! Smart is SEXY! My neuro is not what anyone would call sexy, but he just so sweet and SMART that it is sexy! I always make him blush and sweat! It is too funny!!!!!
Truly though, he is an amazing guy and has taken such good care of me! Erin Quote:
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Erin . |
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#15 | |||
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Senior Member
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THe chicken dance isn't so bad but the other one kicks my butt! I aways feel like a total idiot when I can;t get up! It does make me chuckle, though!
Who knew I was so sick? Erin Quote:
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Erin . |
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#16 | |||
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Senior Member
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When I was first diagnosed I was too weak to fight @ all. My neuro told me "You have to hold your arms up" and I really tore into him! Granted, I was scared, really scared, cos' I usually do not snap like a dry twig over everything, but I was to weak to hold anything up - even a tea cup!
My lists are a part of my new life! I need them for everything! I double/triple check everything now............ You know, I have the same problems with words. It has to be the MG. I just can;t "find" them some times..........so frustating!!!! My son makes fun of me, but in a cute way........ ![]() How are you today? Are you feeling well? Still swimming? ![]() ![]() Quote:
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Erin . |
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