Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Hi All- Forgive me if this posted twice... I was diagnosed when I was about 13 years old. Since then I've encountered too too many doctors who've looked at my absolute text book symptoms and asked if I was sure that the CMT diagnosis was correct (the initial diagnosis paperwork is long lost) sheesh! I could go on and on about my frustrations in finding a doctor and/or physical therapist who knows anything about about CMT but instead I'll tell an interesting story: I was on a flight from Chicago to Baltimore. The elderly gentleman next to me never said a word to me until the flight landed at BWI. At that time he turned to me and said " Charcot Marie Tooth, right? " I was shocked. I asked if he had seen my AFO's. He replied that he was a retired neurologist and all he had to do was to look at my hands and he knew (It's the kind of " webbing " between my thumb and index finger as opposed to the muscle mass most people have). Of course, glancing at my hands isn't a qualified diagnosis but I find the story interesting when I hear of how many people that were constantly misdiagnosed when all this man had to do was to look at my hands! -mari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 In a message dated 1/3/2001 1:21:19 AM Eastern Standard Time, thatgirl@... writes: << It's the kind of " webbing " between my thumb and index finger as opposed to the muscle mass most people have). >> Mari I found it interesting that you referred to the skin as " webbing " . I never looked at it that way. I always thought it was just " flabby " . When I stretch my thumb away from the index finger, the skin is very thin and flexible. Is yours that way. Anyone else have this sign? I had never read anywhere that CMTers have this " webbing " , so I always wondered if I was alone in this. My daughter's hands are not like this. Also, does anyone out there in CMT Land have lines on the palms of your hands. I do, my daughter does not. Feet are the same way. I have always referred to them as wrinkles, but instead of just having the normal lines, I have hundred of small ones, looks like the hands just didn't fill out. Hope I explained it so all you guys understand. Like I said, feet are the same, hundred of little lines. Neurologist has looked at my hands, made no comment. I don't know how all your doctors act when you bring up something, but mine just look at me like I'm crazy, so I haven't asked about that. Looking forward to responses. Something else we can learn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 In a message dated 01/03/2001 6:43:00 AM Pacific Standard Time, ktbugg54@... writes: << >> Hi, , Margaret here, I have LOTS of lines on my hands and feet. Didn't really pay attention to my feet until i read your post. Yep! Lot's of tiny lines everywhere! Starting to notice some webbing too! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 In a message dated 1/3/2001 11:38:32 AM Eastern Standard Time, ODIEMARK280@... writes: << >> Hi, , Margaret here, I have LOTS of lines on my hands and feet. Didn't really pay attention to my feet until i read your post. Yep! Lot's of tiny lines everywhere! Starting to notice some webbing too >> Thanks for sharing Margaret. I'm glad I'm not alone. I always thought I was a freak. They look wrinkled, don't they? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Hi and the Group, It's not mentioned that much, but deterioration of the opposeable thumb muscle is probably as common as the dorsiflexion. As in my feet the left is worse than the right. This is the muscle the Neuro-doc chose to test with the needle electrode. That did smart. It is the major reason for hand weakness. - EdM -----Original Message----- From: ktbugg54@... <ktbugg54@...> egroups <egroups> Date: Wednesday, January 03, 2001 9:38 AM Subject: Re: [] Initial Diagnosis >In a message dated 1/3/2001 1:21:19 AM Eastern Standard Time, >thatgirl@... writes: > ><< It's the kind of " webbing " between my thumb and > index finger as opposed to the muscle mass most people have). > >> > >Mari >I found it interesting that you referred to the skin as " webbing " . I never >looked at it that way. I always thought it was just " flabby " . When I stretch >my thumb away from the index finger, the skin is very thin and flexible. Is >yours that way. >Anyone else have this sign? I had never read anywhere that CMTers have this > " webbing " , so I always wondered if I was alone in this. My daughter's hands >are not like this. >Also, does anyone out there in CMT Land have lines on the palms of your >hands. I do, my daughter does not. Feet are the same way. I have always >referred to them as wrinkles, but instead of just having the normal lines, I >have hundred of small ones, looks like the hands just didn't fill out. Hope I >explained it so all you guys understand. Like I said, feet are the same, >hundred of little lines. Neurologist has looked at my hands, made no comment. >I don't know how all your doctors act when you bring up something, but mine >just look at me like I'm crazy, so I haven't asked about that. >Looking forward to responses. >Something else we can learn. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 ----It's the kind of " webbing " between my thumb and index finger as opposed to the muscle mass most people have). --see my post on tale-telling hands--and yes, I suppose the palms of our hands do have more lines/wrinkles than others now that you mention it. Ann - Original Message ----- From: <ktbugg54@...> <egroups> Sent: Wednesday, January 03, 2001 8:42 AM Subject: Re: [] Initial Diagnosis > In a message dated 1/3/2001 1:21:19 AM Eastern Standard Time, > thatgirl@... writes: > > << It's the kind of " webbing " between my thumb and > index finger as opposed to the muscle mass most people have). > >> > > Mari > I found it interesting that you referred to the skin as " webbing " . I never > looked at it that way. I always thought it was just " flabby " . When I stretch > my thumb away from the index finger, the skin is very thin and flexible. Is > yours that way. > Anyone else have this sign? I had never read anywhere that CMTers have this > " webbing " , so I always wondered if I was alone in this. My daughter's hands > are not like this. > Also, does anyone out there in CMT Land have lines on the palms of your > hands. I do, my daughter does not. Feet are the same way. I have always > referred to them as wrinkles, but instead of just having the normal lines, I > have hundred of small ones, looks like the hands just didn't fill out. Hope I > explained it so all you guys understand. Like I said, feet are the same, > hundred of little lines. Neurologist has looked at my hands, made no comment. > I don't know how all your doctors act when you bring up something, but mine > just look at me like I'm crazy, so I haven't asked about that. > Looking forward to responses. > Something else we can learn. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 The neurologist that I saw told me that one of the signs they look for is lack of " padding " or fat pad between the thumb and index finger. In egroups, ktbugg54@a... wrote: > In a message dated 1/3/2001 1:21:19 AM Eastern Standard Time, > thatgirl@s... writes: > > << It's the kind of " webbing " between my thumb and > index finger as opposed to the muscle mass most people have). > >> > > Mari > I found it interesting that you referred to the skin as " webbing " . I never > looked at it that way. I always thought it was just " flabby " . When I stretch > my thumb away from the index finger, the skin is very thin and flexible. Is > yours that way. > Anyone else have this sign? I had never read anywhere that CMTers have this > " webbing " , so I always wondered if I was alone in this. My daughter's hands > are not like this. > Also, does anyone out there in CMT Land have lines on the palms of your > hands. I do, my daughter does not. Feet are the same way. I have always > referred to them as wrinkles, but instead of just having the normal lines, I > have hundred of small ones, looks like the hands just didn't fill out. Hope I > explained it so all you guys understand. Like I said, feet are the same, > hundred of little lines. Neurologist has looked at my hands, made no comment. > I don't know how all your doctors act when you bring up something, but mine > just look at me like I'm crazy, so I haven't asked about that. > Looking forward to responses. > Something else we can learn. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 -----Original Message----- From: ktbugg54@... <ktbugg54@...> egroups <egroups> Date: Wednesday, January 03, 2001 4:45 PM Subject: Re: [] Initial Diagnosis >In a message dated 1/3/2001 11:38:32 AM Eastern Standard Time, >ODIEMARK280@... writes: > ><< >> > Hi, , Margaret here, I have LOTS of lines on my hands and feet. Didn't > really pay attention to my feet until i read your post. Yep! Lot's of tiny > lines everywhere! Starting to notice some webbing too >> > >>>>>>I have webbing and wrinkles of my hands to. The wrinkle look is from atrophy of the intrinsic muscles of the hands. ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 -----Original Message----- From: Broomfield <mbroomfield@...> egroups <egroups> Date: Wednesday, January 03, 2001 9:42 PM Subject: Re: [] Initial Diagnosis > >----It's the kind of " webbing " between my thumb and >index finger as opposed to the muscle mass most people have). > >--see my post on tale-telling hands--and yes, I suppose the palms of >our hands do have more lines/wrinkles than others now that you mention it. > Ann >>>>>> >>>>>>Look at he palm of your hands while stretching/spreading your fingers out tight as you can, if you have atrophy there, it will show as a box like indentation or hollowness. ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 I would think all humans have extra skin between the thumb and finger so they can move the thumb out to grip..With CMTers the deterioration (atrophy) of muscles, because of lack of nerve stimulation, to the muscle between the thumb and finger causes the skin to be flabby instead of padded with muscle...This is a very common sign of CMT as noted in previous postings... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 In a message dated 1/3/2001 11:36:24 PM Eastern Standard Time, rmax@... writes: << >>>>>>I have webbing and wrinkles of my hands to. The wrinkle look is from atrophy of the intrinsic muscles of the hands. ~>Becky M. >> Becky and all My hands have always looked like this. School mates used to comment and say they looked llike and old womans hands. Embarassed me so. Have yours always been like this or have they changed in appearance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 In a message dated 1/3/2001 11:38:03 PM Eastern Standard Time, lcconley@... writes: << The neurologist that I saw told me that one of the signs they look for is lack of " padding " or fat pad between the thumb and index finger. >> Glad to hear that . Neurologist have never said anything to me about the hands. They looked at the feet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 In a message dated 1/3/2001 9:00:13 PM Eastern Standard Time, edwinrmore@... writes: << Hi and the Group, It's not mentioned that much, but deterioration of the opposeable thumb muscle is probably as common as the dorsiflexion. As in my feet the left is worse than the right >> Hi Ed Yes, I know about the thumb muscle and the deterioration. Sometimes my thumbs, especially if over worked, will freeze in position that I don't want them to, I have had to manually pull it back into normal position. Big toe on left foot has done same thing. My right foot was always the weakest, been fused to keep me walking without spraining any more. Entire left side has been my problem for the last year. One day at a time, that's all we can do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 -----Original Message----- From: ktbugg54@... <ktbugg54@...> egroups <egroups> Date: Thursday, January 04, 2001 6:17 AM Subject: Re: [] Initial Diagnosis >In a message dated 1/3/2001 11:36:24 PM Eastern Standard Time, >rmax@... writes: > ><< >>>>>>I have webbing and wrinkles of my hands to. The wrinkle look is from > atrophy of the intrinsic muscles of the hands. ~>Becky M. > >> > >Becky and all >My hands have always looked like this. School mates used to comment and say >they looked llike and old womans hands. Embarassed me so. Have yours always >been like this or have they changed in appearance. > > >>>>>They have become this way over the past 3 years. I progressed fast. ~>Becky M. Quote Link to comment Share on other sites More sharing options...
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