Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Tommy, I try to make sure all of the dog toys are picked up every day and night, unfortunately he is still a pup and seems to take them back out while we are sleeping. I am looking further into the drop foot aspect since I stepped on the bone with the foot (my left) that doesn't seem to give me trouble (as far as pain goes) right now. It was my " trouble " foot that wouldn't come up to catch me (my right). I'm going to ask my neurologist when I see him next if he seems to think I have a slight case of drop foot. The specialist I saw last week said based on my labs, EMG and my history that he is 99.9% positive it's CMT type 2. Thanks for your insight. Good luck with your back and everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 Elaina, It's great to help. 8 years ago when I found out and even when my dad and sis found out there was no place to go. if you told a doctor you had CMT they had know idea what it was. I was lucky my orthopedist knew about it and my sis did alot of searching on the internet but now there is more info and more doctors know a little bit more about it now then back then. At my first SSD hearing the judge had know idea what CMT was and didn't want the info my lawyer had and I lost that one. the second SSD hearing the judge took the info and I finely got it after 4 years. Have you tried getting a DNA test to see what type of CMT you have? You can try going to a MDA clinic. it takes some time, they usually only do thing once a month. And if you don't have good insurance the MDA clinic picks up the tab. so the MDA will pick up the rest so I think you should check into that. I have CMT type 2. it's not that bad. I have chronic back pain drop foot my hands don't work as good as they used to the cramp up alot even typing. I only use 2 fingers if I try to use more they cramp up. I can't play video games but I guess it could be alot worse. There are allot of people with CMT with leg brace's or in wheelchairs. I pray I don't get that bad because my doctors say they don't know if I'll stay the same or get worse the only thing getting worse is my back and I just started getting used to the pain I just hope it doesn't get any worse. Good luck with the puppy try putting the toys in a place he can't get them you don't want to fall and break something and with CMT you have weak ankles so watchout. Tommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Tommy, My neurologist did some tests through Athena Diagnostics but I'm not sure which type of CMT he tested me for. Whichever it was it came back negative. The neurologist seemed shocked at this so he sent me to a specialist in Rochester. He is the one who said with my history and EMG and even the lab results he is sure I have CMT type 2. I agree that it's not that bad, but my symtoms have come on so fast and furious that right now, to me, it seems really bad. I'm hoping for more answers this month when I see my neurologist again and my podiatrist next month. Elaina. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Hi Elaine,, I am an Elaine also. And my youngest daughter 8 years ago was tested for CMT and sure enough there it is. I always wanted to know why most of us in the family have an odd walking gait and for years no doctor ever diagnosed it. I too have a drop foot which is my left and trip alot, I really have to pay attention to how I am walking and where. I have fallen so much on my knees especially the right one that I don't know how much more they can take. I am 56 years old and my balance is getting worse too. I sometimes get sick of people staring at the way I walk but then again I tell myself , oh well, if they have nothing better to do then to watch me they need to get a life. LOL Anyway just wanted to say hi and I have belonged to this site for quite awhile but don't email that much. Take care Elaine in Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Elaina, Did they do a DNA test thats the best way to find out what type of CMT you have if you have a MDA clinic near you try there. The same thing happened to me I was in construction for 13 years and I had no problems until after I hurt my back and now I have problems with my hands,feet,legs, and my back is shot. when I worked I had hands like a vice grip now I have trouble opening jars. And my father was 58 when he started to have bad symptoms and thats when he found out he had CMT. And I don't think doctors can actually tell you if your going to get worse or stay the same. So good luck and keep me updated on your progress. Tommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 I use a muller ankle brace. I love it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 I'm just curious about all of the CMTers with severe foot drop who are tripping and falling if doctors are recommending AFOs. I've had mine since age 5 and without them the foot drop is so severe that I'd trip and fall constantly. AFOs can sure save a lot of banged up knees and twisted ankles. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2005 Report Share Posted February 10, 2005 Elaine, Thanks for sharing your experience. Good luck to you and your daughter. Quote Link to comment Share on other sites More sharing options...
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