Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 --- rdanietafost@... wrote: > I have been reading posts for a couple of weeks but > this is the my Dear Danita, Welcome to the group. My name is Kathy, I'm 35. I've known for about 3 years that it was CMT that I had, like you I knew something was wrong, Just didn't know what. I just sold all my horses this past winter, because keeping up with them was too exausting for me. Simple tasks wear me out. I didn't know till just recently that it was part of CMT. My hands are not affected, but I've never had balance. I started walking strange at 26 and that has slowly deteriorated over the years. I live in Tennessee. We moved here from Florida 4 years ago. The terrain is killing me-Rocks and mountains. I love my ankle braces they give me some security with walking. This group has been wonderful for me, because only some one with a muscular disorder could understand what its all about. I still don't think my husband fully understands what I'm not capable of doing or why. Do you have any children? I have 4 sons, one has CMT that we know of. I suspect that my youngest may have it too. Two of my boys are tremendous athletes and one of them is working on a football scolership, so you never know. Thanks for sharing, Kathy first time to write. I was diagnosed with CMT in > 1998. Although I > have known for years that there was something wrong. > I have known for > about 10 years what I had since my aunt was > diagnosed and I had the > same symptoms. For many years ,I am 33 and have had > problems that I > can remember since about 12, I have went through > cycles of hurting > feet for a couple of months and then I would be fine > for several > months. In the past year it has been a steadily > increasing problem > and my hands are now affected. I have problems with > tripping over my > own feet, if I try to stand in one spot I fall, > climbing stairs has > become impossibe,I drop things,my hands are shaky > especially when I > am carrying something. I am in the process of > applying for SSD I had > another EMG last Friday and went to see about braces > yesterday. Two > years ago I was telling my husband this is not going > to affect me > that much. I can work with it. Then in NOvember of > 1999 I found that > after work I couldn't even walk up the front steps > to get in the > house when I got home from work. I was pushing my > body so hard at > work that when I wasn't working I couldn't do any > thing. > I have found lots of interesting posts here and can > relate to most. > I will be visiting often. Danieta > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 Kathy Yes, I have three daughters none of them have been tested but I am sure that my youngest has CMT. She has feet that look just like mine also she complains of aching legs. The other two are twins and I think one may have it. We know that she has Scholiosis and I understand that it is one of the signs also she so uncoordinated, Just as I was as a kid. The twins are 12 and that is about when I started having problems. Tonda , the twin I think has it , has tried playng sports but she is so awkward that I feel sorry for her. Her twin sister , Ronda is also clumbsy but not as bad. The funny thing is that my youngest daughter ,, The first one that I suspected had CMT is very Coordinated and can turn flips and dance and has no problems with balance. But 's feet are tuned in and aways have been. I first noticed her legs when I had a picture taken of her when she was about 6 months old and in the picture it was very obvious.I am looking forward to having someone my age to talk to about CMT. Until now I have only had my aunt. It is nice to talk to her but we don't have the same interests and her kids are all grown. And right now since I am not working I need something to do. Thanks for the welcome . Danieta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 Danieta Welcome to the chat. I am just back from vacation and catching up on everything. So Welcome again. Martha rdanietafost@... wrote: I have been reading posts for a couple of weeks but this is the my first time to write. I was diagnosed with CMT in 1998. Although I have known for years that there was something wrong. I have known for about 10 years what I had since my aunt was diagnosed and I had the same symptoms. For many years ,I am 33 and have had problems that I can remember since about 12, I have went through cycles of hurting feet for a couple of months and then I would be fine for several months. In the past year it has been a steadily increasing problem and my hands are now affected. I have problems with tripping over my own feet, if I try to stand in one spot I fall, climbing stairs has become impossibe,I drop things,my hands are shaky especially when I am carrying something. I am in the process of applying for SSD I had another EMG last Friday and went to see about braces yesterday. Two years ago I was telling my husband this is not going to affect me that much. I can work with it. Then in NOvember of 1999 I found that after work I couldn't even walk up the front steps to get in the house when I got home from work. I was pushing my body so hard at work that when I wasn't working I couldn't do any thing. I have found lots of interesting posts here and can relate to most. I will be visiting often. Danieta --------------------------------- border= " 0 " alt= " " src= " http://adimg./img/3862/10/_/616793/_/957885166/specialoffer468x6\ 0a3.gif " > --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 Hi Danieta! I could totally identify with you when I read your " letter " . I am a 37 year old Norwegian girl, married and living in England. I also used to work, and one of the sadest things I did was giving it up. I pushed myself for 6 years working in the Miniastry of Justice in Oslo. I loved my job, but I could not cope. Every day I was physically sick before work and when I came home. Total exhaustion! The last year I tried 50% work (every second day) but I just had to give up in the end. I also believed that my illness would not progress as badly as it has. The last five years things have gone from bad to worse healthwise. When I met my husband 5 years ago, I was much " stronger " than I am now. I stumble and fall all the time and now my hands have gone all " inward-bent " and numb. I can just use my indexfingers typing (I used to type well at work every day.) I do try to look at the good things in life and I appreciate a kind, understanding husband etc. but it is not always easy to be optimistic when every little thong is a struggle. Stay in touch! Best Wishes from Nina Cat. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 Dear list, Our 4 1/2 month old (1/10/00) son was just diagnosed with torticollis. We first noticed his asymetrical ears and head about a month ago, and just this week we've noticed his head is beginning to tilt to his left. We will begin PT and OT once a week each for 3 months on Thursday. Will PT/OT improve the plagiocephaly or is a helmet or headband always needed? If helmet/headband therapy is needed, when is the optimum time to begin? Is it more effective at 4 1/2 months or can we wait until he is 7 or 8 months to see how the therapy and repositioning help? Does anyone have doctor and PT/OT recommendations in New York City? (Contact me off list if you'd prefer: dwilknyc@...) I wish I could read through the entire archive to get all the information but with an adorable infant bouncing about the house, this is impossible; forgive me for asking questions already addressed on the list. Thank you very much, Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Hi Deborah! 4 1/2 months of age is creeping up on the MOST ideal time to get started with helmet/band therapy. Yes, you could wait until 8-9 months (or longer), but the older the baby is, the longer they will be in therapy. You see, babies grow so fast in the first few months of life, and growth is KEY in fixing those noggins!! Many babies who start really young only go thru about 6-8 weeks of treatment, while older babies may take several months and more than 1 band/helmet. Keep in mind tho that every baby is different and it all depends on the age, and severity of the condition. As far as positioning goes, we have heard from ONE mom who said positioning worked for her little one. She was fortunate enough to have a diagnosis at 1.5 - 2 months of age and got an early start. I myself started positioning my daughter at about 1 1/2 months, positioned aggressively for about 4 months and saw no change. It is entirely up to you whether or not you choose to start now or later, but truthfully, there has not been much success in positioning. I know this is all rather discouraging, but if you start early, it won't take too long to fix, and will never remember! It doesn't have to be so clinical either. If you have checked out the files section, you have probably seen many babies with very FUN contraptions on their heads! Keep in touch! Kendra dwilknyc@... wrote: Dear list, Our 4 1/2 month old (1/10/00) son was just diagnosed with torticollis. We first noticed his asymetrical ears and head about a month ago, and just this week we've noticed his head is beginning to tilt to his left. We will begin PT and OT once a week each for 3 months on Thursday. Will PT/OT improve the plagiocephaly or is a helmet or headband always needed? If helmet/headband therapy is needed, when is the optimum time to begin? Is it more effective at 4 1/2 months or can we wait until he is 7 or 8 months to see how the therapy and repositioning help? Does anyone have doctor and PT/OT recommendations in New York City? (Contact me off list if you'd prefer: dwilknyc@...) I wish I could read through the entire archive to get all the information but with an adorable infant bouncing about the house, this is impossible; forgive me for asking questions already addressed on the list. Thank you very much, Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Welcome to the board and condolences on your illness. I know nothing about joint replacements but there is a message board for that on WebMD. http://boards.webmd.com/topic.asp?topic_id=1131 You might have better luck posting there or on their board for joint replacement support group. http://boards.webmd.com/topic.asp?topic_id=1185 Good luck and God bless. ----- Original Message ----- From: M Rheumatoid Arthritis Sent: Wednesday, July 02, 2003 9:10 AM Subject: New to list Hi, I'm Kathy. I found this list a few weeks ago and have been lurking, but I thought I would take the plunge. I was diagnosed with RA in 1975, when I was 20. I've been on many different meds over the years, right not it's Tolectin, Plaquenil and Sulfasalazine. I kept working as long as I could, but finally went on disability 3 years ago. I've had wrist and ankle fusins, and my rheumatologst is now suggesting a hip replacement but the surgeon is reluctant to do it in someone my age. Has anyone else gone for the new hip and how have you done with it? Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Hi Kathy, There is a "metal-on-metal" surface hip joint that is currently in the FDA evaluation process. This was developed to use in younger patients, as it would presumably last longer than the standard prosthetic devices. You may want to follow up on this with your orthopedic surgeon to find out if you might be a candidate for the clinical trial. Sandy From: M Reply-Rheumatoid Arthritis Rheumatoid Arthritis Subject: New to list Date: Wed, 2 Jul 2003 09:10:06 -0700 (PDT) Hi, I'm Kathy. I found this list a few weeks ago and have been lurking, but I thought I would take the plunge. I was diagnosed with RA in 1975, when I was 20. I've been on many different meds over the years, right not it's Tolectin, Plaquenil and Sulfasalazine. I kept working as long as I could, but finally went on disability 3 years ago. I've had wrist and ankle fusins, and my rheumatologst is now suggesting a hip replacement but the surgeon is reluctant to do it in someone my age. Has anyone else gone for the new hip and how have you done with it? Kathy Add photos to your messages with MSN 8. Get 2 months FREE*. Quote Link to comment Share on other sites More sharing options...
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