Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 Gretchen - Can you point this CMT 2A person to a paper or something that explains the involvement of nerves in type 2. Between the two doctors, Shy and the one at McMaster, they also called it 2a2 and said there could be optic and brain atrophy involved. He scared the daylights out of me. So far I have neither optic nerve or brain involvement but my legs, arms, hands, vocal cords and diaphragm are. What 2a2 says does not describe me at all. My neurologist gave me some info on it but not as much as I'd like. Where can I find more on CMT2a or 2a2 if there is such a thing, please, that I can really understand. Like most of us, research papers don't always give us information we can truly absorb or understand. I've read hundreds of them and written summaries on them but the work involved is horrendous if you aren't a medical person. Has anyone written a description of the various types in layman's terms that you know of? . Thanks, Crabtree C.M., O.Ont., O.M.C., B.A., LL.D.(hon.) One Springbank Drive St. Catharines, ON, Canada L2S 2K1 905-685-0496 linda@... www.AccessibleNiagara.com www.NiagaraShares.com www.Crabtree.com www.stcatharinesart.com http://www.lindacrabtree.wordpress.com Community Action Award (ON Govt.) 2009 Tourism Industry Association of Ontario Volunteer of the Year 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 , Can't think of anything right off for nerves in 2A that is in layman's terms, but I will look through my personal files. One thing I do remember was the great info in Paolo Vinci's book about axonal forms and what nerves do. Have you got the book? Other than that, there's all of Pub Med to crawl through or this place http://neuromuscular.wustl.edu/time/hmsn.html#2a2 but it's all medical speak. Dr.Baloh might have written something, but first I have to remember where he is! Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Hi ,  I like Dr. Bird's descriptions in GeneReviews...  CMT2A - http://www.ncbi.nlm.nih.gov/books/NBK1511/ CMT2 - http://www.ncbi.nlm.nih.gov/books/NBK1285/ General overview: http://www.ncbi.nlm.nih.gov/books/NBK1358/  I recall seeing that study a couple of years ago that spoke of issues with the brain, but haven't heard anything since, except regarding CMTX.  The article above mentions that optical atrophy is an issue for some people with CMT2a and that visual evoked potential exams might be a helpful diagnostic tool.  From: Crabtree <linda@...> Subject: Re: Descriptions Date: Wednesday, January 12, 2011, 1:13 PM  Gretchen - Can you point this CMT 2A person to a paper or something that explains the involvement of nerves in type 2. Between the two doctors, Shy and the one at McMaster, they also called it 2a2 and said there could be optic and brain atrophy involved. He scared the daylights out of me. So far I have neither optic nerve or brain involvement but my legs, arms, hands, vocal cords and diaphragm are. What 2a2 says does not describe me at all. My neurologist gave me some info on it but not as much as I'd like. Where can I find more on CMT2a or 2a2 if there is such a thing, please, that I can really understand. Like most of us, research papers don't always give us information we can truly absorb or understand. I've read hundreds of them and written summaries on them but the work involved is horrendous if you aren't a medical person. Has anyone written a description of the various types in layman's terms that you know of? . Thanks, Crabtree C.M., O.Ont., O.M.C., B.A., LL.D.(hon.) One Springbank Drive St. Catharines, ON, Canada L2S 2K1 905-685-0496 linda@... www.AccessibleNiagara.com www.NiagaraShares.com www.Crabtree.com www.stcatharinesart.com http://www.lindacrabtree.wordpress.com Community Action Award (ON Govt.) 2009 Tourism Industry Association of Ontario Volunteer of the Year 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Thanks Gretchen. I have that and you're right, it doesn't tell the layman much. . On 12-Jan-11, at 8:08 PM, gfijig wrote: > , > > Can't think of anything right off for nerves in 2A that is in > layman's terms, but I will look through my personal files. One thing > I do remember was the great info in Paolo Vinci's book about axonal > forms and what nerves do. Have you got the book? Other than that, > there's all of Pub Med to crawl through or this placehttp://neuromuscular.wustl.edu/time/hmsn.html#2a2 > but it's all medical speak. Dr.Baloh might have written something, > but first I have to remember where he is! > > Gretchen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Thanks : I've printed it off. I've had the visual testing with the electrodes glued to my scalp and all is still well there. As far as I know, my brain is still working fine but I have lost so much of my hand strength in the last year it is sickening. The frustrating thing is that there is absolutely nothing one can do about it. Cheers! C. Quote Link to comment Share on other sites More sharing options...
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