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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#29 | ||
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One more time!
Hi All - I'm gonna try to type REAL FAST so please forgive typos! Christy - Love the leaf blower idea ![]() Kate - the "snarling" got a good giggle out of me - what a mental picture I had! It's amazing how the body compensates for things without us even knowing it's doing it, huh? Hope you have a great time at your aunts dairy farm - my grandma had a farm that I would spend a couple of weeks every summer at as a child. What fond memories! Enjoy and relax and get rid of that droop while you're there, huh? Connie - it's very interesting to me that MG is virtually non-existent in Singapore. It makes me wonder what's different in the diet and lifestyle that saves them from it! I'd read that the closer to the equator one spends their first 15 years the less chance of developing MG, but there has to be more to it - surely they're just as mobile there as the rest of the world. Good luck with the overseas trip to see a neuro - I hope you get a good one that can get you your dx and treatment in short order! Rumpled - Re-dx'd - I've been there, and still it's questioned. So frustrating, I know! With your mother showing signs, have your neuro's considered Congenital Myasthenia on you? The mechanics are different - not an autoimmune but a genetic cause so it won't show in the blood but will on EMG or SFEMG. I can relocate a link for you if you'd like and post it for you, but I think it may be a possibility. That might also get your mother to another (yours?) neuro for further testing. Also, hope the kittens are keeping you entertained. I know our two pups make me laugh just watching them, and that's good medicine you know! ![]() Whirwind - I'm so glad to hear you're doing better. You seem much more relaxed in your post. That swimming pool sounds awesome and I hope it'll help you too - I know when I am in cool water I feel so much better and my stamina is a lot better! As for being an Aflac commercial - don't feel bad; my dad always said I was like a bull in a china cabinet! Maybe I do have the congenital MG if I was always clumsy! Stephanie - AAAHHHH Massage! Love it. I have found the best CMT ever! I've seen a lot of them, but she really tailors the massage not only to your med problems, but to how I'm doing from one day to the next. I swear she has magic in her hands, because I come out walking better an energized after seeing her - even in this last serious bout I've been having. I'm a little concerned over your post about your tongue feeling thicker, though. Be careful with that, because it sounds like your weakness is maybe spreading? Watch for choking and breathing, and rest whenever you can! Erin - Hi, baby! I hope I wasn't too stern on my last post. You know it's just cuz I loves ya, and don't want to see you be your own worst enemy! As for the situation with your dad, I think you're right but fighting the whole fam is tough - especially when you have health issues to deal with for yourself! Can you call a pow-wow and present them with some choices, such as put him in assisted living (they're wonderful, by the way - a way to keep their independence while being watched over - make sure your fam knows you're not talking about a nursing home), leave him where he is, but with a stipulation that other family memebers have to check on him by phone or in person on a REGULAR basis and help with his bills - if they can't pay they shouldn't have a say! (in my humble opinion); or leave things as they are and everyone takes a chance that it could turn out very badly. Maybe some literature on the assisted living, and some input from his doctor would help? I'm sorry you are in this position. It's such a hard thing to have to do when you don't have support from at least the majority of those involved. I wish you a lot of luck in dealing with it. Keep us informed! Kristie - I so hope you are right and the pompe isn't a good fit. It would break my heart for you and your family! I hope you all get feeling better real soon with the virus - get as much rest as you possibly can, ok? And be sure to let me know when you have the test, and then when the results get back. You know I'll be thinking of you and praying for a good result! You're much too young and too sweet for any other outcome! As for me - I went back into the big bad world and...... caught the FLU! First day back to work I ended up in the same room with an employee that was running a 102 fever and was "really sick" but came in for a seminar on our profit sharing account change! Sure enough, it got me. My trusty neti pot and some vicks vapo rub seem to have helped me get over it quickly though! I'll be going to see my mom the first time since Xmas tomorrow with my daughter, Angie and granddaughter, Alexis. I can hardly wait! Then, Monday we are having a b-b-q for both Memorial Day and as a farewell to Angie and Alexis. They are moving to Minnesota for a while so my daughter can get back on her feet. She has people there with connections for a place to stay rent free while she gets back on her feet, and job connections, as well as someone to watch Lex no matter what kind of shift she has to work. It's actually her ex husband and his family - good thing they kept everything real friendly! And they all love Lex, so I'm good with it - sad to see them go even for a while though ![]() Gotta get this posted before I time out again! Talk to you all soon - Have a great week-end!
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Becky |
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"Thanks for this!" says: | rumpled (05-26-2009) |
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