Guest guest Posted August 31, 2000 Report Share Posted August 31, 2000 Hello everyone, I have a question for those of you who know what 'type' you have. Does knowing your type help you in any way? Has anyone suggested specific treatment or course of care for your type? So you know your type - then what? I mean what do you do with this information? How does knowing your 'type' affect you emotionally or psychologically? Like I said before I was diagnosed way before types and I am just curious as to what those of you do with the 'type' knowledge. Thanks for your insight. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2000 Report Share Posted August 31, 2000 In a message dated 8/31/00 9:35:39 AM, liliwigg@... writes: << I have a question for those of you who know what 'type' you have. Does knowing your type help you in any way? Has anyone suggested specific treatment or course of care for your type? So you know your type - then what? I mean what do you do with this information? How does knowing your 'type' affect you emotionally or psychologically? >> I've known I have type 2 from the day I was diagnosed with CMT. It has made no difference whatsoever, other than something to talk about when meeting a new person or something. We're all in the same boat as far as I know. At the time of diagnosis, I did agree to have blood drawn to be used in research. Hope this helps. Kat in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2000 Report Share Posted August 31, 2000 Does knowing your type help you in any way? Carolyn's Answer: NO Has anyone suggested specific treatment or course of care for your type? Carolyn's Answer: NO So you know your type - then what? Carolyn's Answer: I was just glad to find out that I had a real disease and that it had a name! and that I wasn't just a klutz! How does knowing your 'type' affect you emotionally or psychologically? Carolyn's Answer: Knowing the " type " has absolutely no effect in my life. I've got it and it's progessive - at its own rate! AND, I think we can get sidetracked really easily into stuff like " what type " etc. I think it may be because we're searching for answers - sometimes desparately searching. IM(not so humble)O, I'm just glad that there are SOME answers out there. Not so many years ago, I guess people just suffered in silence and died not knowing what the heck went on with their precious bodies! Thanks for the good, good questions! Regards, Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2000 Report Share Posted September 1, 2000 Gretchen and all, I agree, I have CMT 1A now what, OK so my kids know they could have the same thing, now what do they do? There is no cure, no help for pain, and as far as counseling goes what are they going to tell me? Oh I am sorry, you have CMT! NOW WHAT!!!!!!!!!!!!!!! Yes, we all know what we have, what can I do about it? NOTHING!!!!!!!!!! Wear a brace, use crutches if needed or a wheel chair! What? Love ya all :)jr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2000 Report Share Posted September 1, 2000 In a message dated 9/1/2000 12:30:52 PM Pacific Daylight Time, jross56922@... writes: << Gretchen and all, I agree, I have CMT 1A now what, OK so my kids know they could have the same thing, now what do they do? There is no cure, no help for pain, and as far as counseling goes what are they going to tell me? Oh I am sorry, you have CMT! NOW WHAT!!!!!!!!!!!!!!! Yes, we all know what we have, what can I do about it? NOTHING!!!!!!!!!! Wear a brace, use crutches if needed or a wheel chair! What? Love ya all :)jr >> TRY TES? That was an option that gave a bit of hope back to me. Quote Link to comment Share on other sites More sharing options...
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