Neuromuscular In memory of Rose Marie.


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Old 01-02-2010, 08:40 PM #1
dahlek dahlek is offline
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dahlek dahlek is offline
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Join Date: Aug 2006
Location: metro DC suburbs
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15 yr Member
Default Each of is is different with different neuropathies?

But, it works! Combined with therapy to help you rebuild your strength and re-learn to walk not only well? BUT PROPERLY is key to getting parts of your life back.
Be cautious about 'overdoing' anything at any given time tho. Go Slowly recover better is my motto. Ask of both your doc and therapists for exercises you can do at home in-between therapies and also use to maintain your strengths once you are thru with the PT. It's far harder to keep up the discipline to keep at it once at home and all 'seems' to be 'fine' tho? BUT it's essential to keep it up at home to be able to keep GOING!
However? Don't plan on PT on any days you get infusions! Heavy exercise, and for us? Anything is heavy exercise....isn't recommended immediately before during or after infusions. Besides, w/pre-meds? You won't want to or care...
As for the 'WHAT to EXPECT' aspect? Who knows? Each of us come down with neuro stuff soo differently. It's hard to piece together ALL of those with immune neuro issues, let alone what happened when to prescipate these effects. Many docs are informed, and too many not-informed and thus putting puzzle pieces together is even harder.
Kelly? There IS HOPE! There always IS HOPE! Don't ever forget that! The key is finding the docs who can give you hope! Keep LEARNING! The more you know, about your tests and results? The better YOU are able to learn even more than you ever thought you'd need to know about what you possibly might have and THEN how to take care of yourself with the whatever you have! Don't sit and be miserable about it all? LEARN! Then, LEARN MORE! Be ABLE TO TALK TO YOUR DOC IN LANGUAGE HE 'TENDS' TO TALK IN. I've found my doc to 'respect' me more that I've learned the lingo? Never ever say: I've found 'this/that' on the internet? Cite only research such as from the NIH or PUB-Med..... and then leave it at that. YOU are being proactive, if your doc isn't? Then he/she mite be behind the 'learning curve' for you! Hugs and hope always -j
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Old 01-09-2010, 09:33 PM #2
Kelly in Oklahoma Kelly in Oklahoma is offline
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Kelly in Oklahoma Kelly in Oklahoma is offline
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Quote:
Originally Posted by dahlek View Post
But, it works! Combined with therapy to help you rebuild your strength and re-learn to walk not only well? BUT PROPERLY is key to getting parts of your life back.
Be cautious about 'overdoing' anything at any given time tho. Go Slowly recover better is my motto. Ask of both your doc and therapists for exercises you can do at home in-between therapies and also use to maintain your strengths once you are thru with the PT. It's far harder to keep up the discipline to keep at it once at home and all 'seems' to be 'fine' tho? BUT it's essential to keep it up at home to be able to keep GOING!
However? Don't plan on PT on any days you get infusions! Heavy exercise, and for us? Anything is heavy exercise....isn't recommended immediately before during or after infusions. Besides, w/pre-meds? You won't want to or care...
As for the 'WHAT to EXPECT' aspect? Who knows? Each of us come down with neuro stuff soo differently. It's hard to piece together ALL of those with immune neuro issues, let alone what happened when to prescipate these effects. Many docs are informed, and too many not-informed and thus putting puzzle pieces together is even harder.
Kelly? There IS HOPE! There always IS HOPE! Don't ever forget that! The key is finding the docs who can give you hope! Keep LEARNING! The more you know, about your tests and results? The better YOU are able to learn even more than you ever thought you'd need to know about what you possibly might have and THEN how to take care of yourself with the whatever you have! Don't sit and be miserable about it all? LEARN! Then, LEARN MORE! Be ABLE TO TALK TO YOUR DOC IN LANGUAGE HE 'TENDS' TO TALK IN. I've found my doc to 'respect' me more that I've learned the lingo? Never ever say: I've found 'this/that' on the internet? Cite only research such as from the NIH or PUB-Med..... and then leave it at that. YOU are being proactive, if your doc isn't? Then he/she mite be behind the 'learning curve' for you! Hugs and hope always -j
Thanks for the info. I did finally find a Dr. that is in-state and on my insurance - yeah! He said he's the only one he knows of that treats MMN patients in the state and I am only his 6th patient. So indeed this condition is very rare. Good tip about citing info. to the Dr. Yes, I agree it's very important to be proactive. Hope you are doing well and have a great week.
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