Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 , thanks for your concern. Unfortunately, the Dr feels she has deteriorated too much for it to be any of the CMTs. They have given her a new diagnosis of Distal Spinal Muscular Atrophy. They said " no " to a tendon transfer for her hand because they feel she is deteriorating too much. Today was an awful day and she/we are devastated. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 -----Original Message----- From: mikerobertac@... <mikerobertac@...> < > Date: Wednesday, June 20, 2001 8:27 PM Subject: [] List Removal a, what type of MD was she diagnosed with? You can unsubscribed at the site, or at bottom of this post is address to unsubscribed. ~>Becky M. > has just been diagnosed with another form of Muscular Dystrophy. >Therefore, I would like to be taken off the mailing list. It has been >wonderful chatting and learning alot from you all. > >God bless you all and your lives. > >a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 -----Original Message----- From: mikerobertac@... <mikerobertac@...> < > Date: Thursday, June 21, 2001 12:02 AM Subject: Re: [] List Removal a, this site has information on SMA. One of the CMT types is listed among Spinal Muscular Atrophy, type 2-G!!!! Maybe you better let your Dr's knowabout this, and not leave this list just yet, ~>Becky M. http://www.neuro.wustl.edu/neuromuscular/ >, > >thanks for your concern. Unfortunately, the Dr feels she has deteriorated too >much for it to be any of the CMTs. They have given her a new diagnosis of >Distal Spinal Muscular Atrophy. They said " no " to a tendon transfer for her >hand because they feel she is deteriorating too much. Today was an awful day >and she/we are devastated. > >a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 >>>>>>a, my former neurologist decided that I could not possibly have CMT due to the fast progression and the type of wasting I had. He was sure that after treating me for almost 3 years that I now had ALS! Well I pointed it out to him that if I had ALS, I would be dead by now or at the very least bedridden, gastric tube fed, breathing on a vent! I changed neurologist, the one I have now, knows that CMT can cause more than the feet, lower legs, hands and forearm wasting. He knows the different types and what they cause. I'm not saying cannot have SMA, but saying so little is known by Dr's about CMT they can and are often times wrong. If it does not fit into the " old " pattern they learned about CMT they think it cannot be CMT, Good Luck, stay with us until %100 sure, Tell stay strong in spirit and better days are ahead, we all pray so, ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 well I have been DXed with all sorts of stuff also. My son Adam is VERY weak and I am sure if he didn't have a family history of CMT He would be Dxed with something other then CMT. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2002 Report Share Posted September 20, 2002 People need to go to the web site area for the group and find the information about "removal from the list". Sending an email to the group doesn't do this as far as I am aware! Chris Quote Link to comment Share on other sites More sharing options...
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