Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 , you asked a loaded question. Everyone with CMT is different and everyone progresses differently. I was diagnosed at age 5. I could walk on the tips of my toes very easily, but I would fall a lot. At age 8 I had my heel chord's lengthened and started wearing metal springed leg braces. I could no longer walk on my toes. When I was 13 I had another surgery and it helped me from turning my ankles in and out. I didn't fall as much. At age 27 I had one ankle fused hoping to help me with my balance. It did. At age 29 the CMT became very effident in my hands. Hands became very weak. I had to stop working. When I was 30 I started using a hand cane but after only a month I went to a Canadian Forearm Crutch (I couldn't grip the cane any longer). I could still step up curbs at this time using the arm crutch. I am now 39 and in order to step up onto a curb I have to use 2 arm crutches or get assistance from someone else. I also have an Electric wheelchair that I use in the home to help me do house work. I have had a scooter for the last 5 years that I used in grocery stores or malls or even at the state fair. My father also has CMT, started at age 5 but yet he started using a cane the day I started using my forearm crutch. And 6 years later he started using Forearm Crutches. He now is in a wheelchair. He can walk using 2 arm crutches very short distances. You see. Mine got worse 1st, but then his caught up with him and now he is worse. A lot depends on your over all health and weather you can stay away from stressful situations. None of us could tell you what you could expect or when. Take care of yourself, Jeanie <A HREF= " Moonglow21@... " >Moonglow21@...</A> or <A HREF= " Jeanie421@... " >Jeanie421@...</A> come and check out Charcot-Marie-Toothonlinechat at <A HREF= " Charcot-Marie-Toothonlinechat " >http://www.e groups.com/group/Charcot-Marie-Toothonlinechat</A> *************************** In a message dated 7/18/00 9:44:16 PM Pacific Daylight Time, oregonpapa@... writes: << I was diagnosed about two months ago after I couldn't stand the pain anymore. Here is the question: How quickly have the rest of you progressed? I mean, if you are in braces or using canes, how long did it take to get there? I am 62 years young now, I have cramping and pain in the feet all the time, starting to get drop foot, hands are starting to cramp on an intermittent basis ... Can anyone tell me what to expect in the future based upon your experience? Thanks in advance for your replies ... >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Wow, Jeanie ... That was great ... so articulate. I can see how some cases are mild (like mine, thank God) and some cases can be really severe. If it isn't too painful for you, I would be interested in what you see in your future. Hang tight ... PS: Ella say " Wow " too ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 In a message dated 7/19/00 9:36:45 PM Pacific Daylight Time, oregonpapa@... writes: > If it isn't too painful > for you, I would be interested in what you see in your future. Hang tight .... > ****************** Hi , like you I have no idea what my future holds. But, I will take a guess at the possibilities achording to how my disability has progresed and my life style. I see myself probably having to use 2 arm crutches anytime I'm away from my home within 5 years time. I will fight to outlast that estimate. Then by the time I am 50 (I am 39 now) I will probably need the wheelchair instead of arm crutches.... Again, I will fight to outlast this also. I can be very stubborn. If I could ever get the stress out of my life I beleive I could have a good fighting chance. However, my life isn't what I call liveable at this time. I'm not whining either........ Jeanie <A HREF= " Moonglow21@... " >Moonglow21@...</A> or <A HREF= " Jeanie421@... " >Jeanie421@...</A> come and check out Charcot-Marie-Toothonlinechat at <A HREF= " Charcot-Marie-Toothonlinechat " >http://www.e groups.com/group/Charcot-Marie-Toothonlinechat</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 What can you use for your hair I wonder if ms makes you loose it? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Last night I felt the painful achy arm that was the very first symptom of my MS and yes it is scary Delo On 6/6/05, Kathy Penrose <kathypnrs@...> wrote: > Hi , > > Yes it does seem as if the old lesions wake up before they can heal. It is > scary to feel like you are going backwards. LDN works. > > When I first started LDN it felt like I was going backwards then that > problem gets better. It took time to make the scare tissue and will take > time to go through it to help the nerves conduct better. I hope this answers > your question. > > Hope all is well, > Kathy > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 From my personal experience and others on this board LDN makes your hair and nails grow like crazy. Also b complex and silica. kathy Re: [low dose naltrexone] 's Question What can you use for your hair I wonder if ms makes you loose it? Thanks Quote Link to comment Share on other sites More sharing options...
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