Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 -----Original Message----- From: willwright100@... <willwright100@...> egroups <egroups> Date: Friday, January 12, 2001 8:52 PM Subject: [] Re: Non-Genetic PN?? >Becky, I got the info from the following site...... > > >http://www.geneclinics.org/profiles/cmt/details.html > > >Will > >>>Thanks Will, isn't it just so maddening when medical sites conflict information! GRRRRRR! Goes to show we know about as much as they do! LOL, I think I know more than my Dr. does, and thats a shame. geneclinics just deals with genes, the genetics of CMT and is new to it at that. They have not yet studied or identified all the types yet so what gives them the right to give out information they have no knowledge of yet? ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 -----Original Message----- From: willwright100@... <willwright100@...> egroups <egroups> Date: Friday, January 12, 2001 8:54 PM Subject: [] Re: Non-Genetic PN?? >Becky, I got the info from the following site...... > > >http://www.geneclinics.org/profiles/cmt/details.html > > >Will ..>>>>>>Will, I went to this site and found this very interesting, it states CMT is painless! So yeah, I believe everything they have to say regarding CMT, NOT, LOL, ~>Becky M. >>>>Establishing the specific subtype of CMT for a given patient involves a medical history, physical examination, neurologic examination, and nerve conduction and EMG testing, as well as a detailed family history and the use of DNA-based testing. Clinical findings. Painless, symmetric, slowly progressive motor neuropathy of the arms and legs beginning in the 1st-3rd decade with a positive family history suggests CMT. The acute onset of painless, focal sensory/motor neuropathy in a single nerve with a history of other affected family members suggests HNPP. Sudden onset of pain and weakness in the shoulder or upper arm associated with distal and/or proximal weakness and atrophy of the upper extremity with other similarly affected family members suggests Familial Brachial Plexus Neuropathy. Typical CMT patients have high-arched feet, weak ankle dorsiflexion, thin distal muscles, depressed tendon reflexes, and distal sensory loss. In CMT1, the most common variety, NCVs are very slow and peripheral nerves may be palpably enlarged. This is not true of CMT2 or CMTX. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 -----Original Message----- From: willwright100@... <willwright100@...> egroups <egroups> Date: Friday, January 12, 2001 9:42 PM Subject: [] Re: Non-Genetic PN?? >Hey Becky, > >The site I sent you on gene clinics was authored by Bird...I >think he has done some research on CMT..A ten year study and I >believe he has authored books on CMT and is one of the top researchers >of CMT if memory serves me right... > >Will > Yes I know Dr. Bird, He researches CMT but I don't think he is one of the TOP researchers, he wants to study me,(he is researching type 2-C, he is on St. Louis. But read on at that site, its tells of optic neuritis, and thats a form of blindness, I know I've had it. It can come and go and come and stay! But they deal with genetics, and still haven't identified alll types yet, so based on that alone, they don't know everything yet. Also, NO PAIN in CMT??? There is a srudy that proves CMTer's have pain due to the CMT. I think they need to UPDATE their site. They are behind in the latest info on symptoms and what all CMT can and does involve. Just because Bird authored the site when it first was set up doesn't mean HE has kept it update. Come to think of it, I'm sure he hasn't, he KNOWS CMT causes pain. ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 In a message dated 1/12/2001 11:10:25 PM Eastern Standard Time, rmax@... writes: << Just because Bird authored the site when it first was set up doesn't mean HE has kept it update. Come to think of it, I'm sure he hasn't, he KNOWS CMT causes pain. ~>Becky M. >> Does anyone know how to contact Mr. Bird and tell him he needs to update his site? Obviously he doesn't have CMT or he wouldn't make such statements. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 -----Original Message----- From: ktbugg54@... <ktbugg54@...> egroups <egroups> Date: Saturday, January 13, 2001 6:21 AM Subject: Re: [] Re: Non-Genetic PN?? >In a message dated 1/12/2001 11:10:25 PM Eastern Standard Time, >rmax@... writes: > ><< Just because > Bird authored the site when it first was set up doesn't mean HE has > kept it update. Come to think of it, I'm sure he hasn't, he KNOWS CMT > causes pain. ~>Becky M. > >> > >Does anyone know how to contact Mr. Bird and tell him he needs to update his >site? Obviously he doesn't have CMT or he wouldn't make such statements. > > >>> I'm not sure of this but think he was one of the Dr's who was on the CMT Pain Study done that proved CMT does cause pain! ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 In a message dated 1/13/2001 6:40:51 PM Eastern Standard Time, rmax@... writes: << > >>> I'm not sure of this but think he was one of the Dr's who was on the CMT Pain Study done that proved CMT does cause pain! ~>Becky M. >> Well then, he definitely needs to update his site. The neuro doc at MDA clinic in Knox told me in Oct. that CMT does not usually have pain associated with it. I quickly told him that I had pain since childhood, so has my daughter. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 -----Original Message----- From: ktbugg54@... <ktbugg54@...> egroups <egroups> Date: Sunday, January 14, 2001 10:34 AM Subject: Re: [] Re: Non-Genetic PN?? >In a message dated 1/13/2001 6:40:51 PM Eastern Standard Time, >rmax@... writes: > ><< > > >>> I'm not sure of this but think he was one of the Dr's who was on > the CMT Pain Study done that proved CMT does cause pain! ~>Becky M. > > >> > >Well then, he definitely needs to update his site. The neuro doc at MDA >clinic in Knox told me in Oct. that CMT does not usually have pain associated >with it. I quickly told him that I had pain since childhood, so has my >daughter. > > >>>> copy the study done on CMT and Pain and mail it to him pronto! I did that to my neurologist who works for MDA of all things! LOL, next appointment, guess who knew all about CMT pain! LOL, And the rewards to this among helping me,is the next CMT patients he see's! ~>Becky M. Quote Link to comment Share on other sites More sharing options...
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