Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Dear ; MY NAME IS DENNIS, I AM 65, AND MUCH LIKE YOUR SELF. IN YOUR LETTER, YOU SAY SOME TERRIBLE THINGS, LIKE MY SISTER DIED FROM THIS DISEASE...WILL YOU EXPLAIN TO ME HOW ONE DIES FROM HAVING [CMT]? NOW, I HAVE HEARD OF OTHERS HAVING DIED FROM CMT, BUT NO ONE EXPLAINS HOW DEATH COMES ABOUT, PLEASE FRANK;...GIVE ME DETAILS. I TOO HAVE PAINS IN MY HANDS AND MY RIGHT FOOT WAS PLACED IN A CROW WALKER BOOT TO GIVE IT SUPPORT. FRANK, YOUR IN THE RIGHT PLACE TO LEARN MORE ABOUT CMT, THERE ARE PEOPLE HERE THAT ARE WELL INFORMED. JUST ASK QUESTIONS, AND YOUR ANSWERS WILL COME. DON'T BE SHY, BECAUSE WE ALL HAVE IT, OR ARE SOMEONE WHO CARE FOR ONE WHO DOES HAVE IT. YOUR CMT FRIEND...DENNIS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Welcome , I wear an AFO on my left leg and it help me quite a bit. I originally got it for footdrop, but I needed a replacement when my ankle become unstable. I didn't notice the change but my orthotist watched my gait and noticed the ankle problem. I know it is a big step to acknowledge that an AFO is needed, but mine makes a great deal of difference in my life. I can dance with my wife again. --Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 HI , I was in big time denial with one of my sons having CMT. Denial is a happy place it's no wonder we stay there for a while. I really enjoy learning about the new research and potential treatments that are coming down the pike. I like the Hope I feel now much better then the denial stage. On most days anyway J enny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 HI, its nice to meet you. Welcome to the list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Hi , It is very nice to meet you. I am sure you will like it here at . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , I am married to an attorney and there is nothing you can do about your podiatrist. I was misdiagnosed with MS for five years and actually took injections once a day for three years until another neurologist told me that I had CMT. (after more testing and a new set of EMGs) Believe me I know how frustrated you must be. It just made me so mad that whenever I questioned his reasons for being convinced I had MS he would shrug me off. CMT is certainly not a " walk in the park " but after hearing that I had MS, I graciously accepted this disease. It sounds like I have a very mild form like your mother. I cannot even think of wearing high heels and my shoe selection is limited, but it could be a lot worse. I think the worst thing about this disease is that when you feel really bad, you " look " normal to others and they tend to think you complain about nothing. THAT is most frustrating! Feel free to write me if you have any further questions. This website is so helpful! Karon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , Welcome. I see myself in you 30 years ago, living in New Jersey and diagnosed with CMT at the same age. I went no where with it, I lived with it and lived all over. I did rather well and keep doing it. I feel very lucky to find , share and learn so much more about me throu so many friends here. I think you should join your local MDA, and go to their clinic, they are very helpfull. I feel good to say that I go and volunteer at the MDA office and I do love it. I cannot give money but I can give my time to help others. I know you have lots of questions like all of us here, I hope you get some answers to help you accept it, live with it and be happy. We are all here for one another. Spy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 : Welcome, . Get with the closest MDA Clinic, let their Neurologist order tests, etc. on their MDA Clinic Day. Should save you some money. Going to the source is best. A foot doctor is a foot doctor, not a nerve doctor. Nowadays, people aren't thinking " out of the box " of the normal realm of things to help people as they're afraid of how " their going to take it " . So, people stay safe and only offer help in their scheme of things. If someone took me by the hand and said, let's go and get help, I'd fall out of my chair. It's usually that you are in charge of your own medical course - seek all the information you can and be pro-active. Gretchen is a great one to listen to to keep active and positive. Donna B. in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 Hi , Some parts of your story seemed like mine - kind of knowing that something was wrong, not being the fastest runner, struggling to find a sport where I was picked first (don't ask why but school soccer and field hockey for some reason worked for me but nothing else did). It is a relief to finally have a name to put to why we have high arches and ankles that turn and knees that dislocate or whatever it is that shows up as a manifestation of CMT as each of us are different. In I have found a great group to seek positive advice, ask people questions as many have similar symptoms, to see if I am going crazy with things. Remember that not everyone is in the same place on the list - some have limited symptoms, others have pronounced symptoms, not everyone has the same type of CMT. Don't let the range of discussion topics scare you - the group is just amazing and although we are not all the same we share the aim of supporting each other (at least that is what I have found). In seeking how to manage my own CMT I have taken a whole body approach. I just recently moved house so the whole body is under some stress now, but in times of stability (once the building works are done in June I hope that order returns along with my routines) I have worked with trainers, physiotherapists, nutritionist and orthotists to get things right for me. To fine tune my habits so that I am healthy from the inside out, making sure that I am not adding anything extra to the already interesting mix! I am also supposed to have a follow up appointment with my neurologist soon, but I live in the UK now and the system here can be hard, so first I have to re-register with my general practitioner and then I can enter the doctor game again. I get lots of great ideas from this list, then cross check them with the people I trust that I have worked with on my " medical team " - I don't know if they know that they are a part of my team, and that is the next lesson - manage your doctors and your medical care carefully, taking ownership of it all (including medical record copies) so that you know you as well as they do. I hope this does not sound too preachy or crazy - but it works for me and this group is as important as any of the other specialists there are out there. Ask lots of questions and I look forward to getting to know you in ! All the best, Donna from London Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hello , Been there and still doing it. You are right about the neurodoc, they tend to stop with the Dx. The best real help that I have had is from a Physiatrist. They are maybe better known as a rehabdoc and are often found in clinics. They look at the whole body and prescribe helps for the symptoms. Short of rebuilding nerve pathways, I think this is the best way to an optimal life for us. He used to say that a Disabled Tag should not be judged on your condition going into the store, but your condition coming out of the store. As for the podiatrist, my advice would be to move on as it can't be changed and he can say that he only did what his training called for. I've tried them twice over the years with no valid effects from either one. Incidentally, when I was twelve years old, a renowned child orthopedic surgeon ( Newington Children's Hospital, CT ) did an operation on my small toes ( removal of the upper phalanges ) which was a total failure. Eleven years later, I was drafted in Hartford, CT and appealed to the medical review board. Guess who was the orthopedist on the board? Needless to say, he would not admit that the operation was a failure and passed me into the service! I got along okay, but got put up on malingering charges after four months in the service. So the best advice then was still just move on with life. EdM from NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2006 Report Share Posted May 17, 2006 Welcome ! I remember in High school when I was on the freshman football team, whenever we did sprints, even the big fat linemen could run faster than me. My poor coach, not only was I slow, but I was small and skinny. He didn't know what to do with me! You're right its much better at least knowing what is going on. If my nerves are dying or dead, how come they hurt so much? It takes more muscle to go up stairs, I can still run up, but why is it so tough going down? These are only rhetorical questions, no answers needed. I just started fishing again, on the Cape Cod canal, I have to walk over rocks carying stuff, sometimes slippery, and oh yeah, it's much tougher walking down to the water's edge than back up. I just go slow and CAREFUL. Last year I was fishing and my feet were starting to hurt from standing around on the rocks and balencing, and in the early morning dim light I suddenly saw this guy on crutches making his way down over the rocks with a fishing rod. I thought He must be crazier than me! He even fell once...I felt less sorry for myself then, I'm just glad for what I CAN do. Thanks to all (especially Gretchen) for all the info. HEY do you think maybe court jesters in medevil times had CMT? They probably flunked Knight school, so they learned to tell jokes. I thought of it because they wore those shoes with the curled up fronts, so they wouldn't catch the front of their shoes, Maybe I'll try those, then I won't stumble as much. Actually I find I don't stumble if I focus on my walking, kind of like a ZEN thing. Excercise, excercise..GOD BLESS to all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Hi , My name is , It is nice to meet you. I hope your daughters' doctor appointment is uneventful I have 3 kids with CMT and I have CMT. My son daughter and I have pes-cavus foot. My other CMT son has flat feet. We all have small feet. My sons and I have weak hands, my daughter has better hand strength we do. My sons and I have cold legs. We all have stiff hands in the cold. We can not walk on our toes or heels. If I stay warm my pain is not so bad. The more weight I lose the more any pain I have gets better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Thankyou Gretchen. It helps a great deal to know that others understand what we are going through. I am sure joining will help me a great deal. >From: " gfijig " <fijiwigged@...> >Reply- > >Subject: Welcome >Date: Mon, 05 Jun 2006 16:26:35 -0000 > >Welcome . Thanks for introducing yourself. Breathing problems can >happen with CMT at any age and not necessarily with 'severity' of the >syndrome. I have known several teenagers who have had breathing >difficulties and found treatment. > >We have two great members who are very active here, also in London, >Donna and Joana. I am hoping when they see this post they will jump in >and offer more help. > >Again, welcome, I hope you find helpful. > >~ Gretchen/Founder-Moderator/ > > > > > > _________________________________________________________________ The new MSN Search Toolbar now includes Desktop search! http://join.msn.com/toolbar/overview Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 Hello Gretchen and Thanks for welcoming me. I have been looking at this excellent site and reading the e-mails for about a month now and have found a lot of useful information on it. As I said, I'm not even sure yet if I have CMT - I'm just hoping that when I go to see the Neurologist he will have heard of it and not think I'm some kind of hypochondriac! I also have two sons aged 13 and 11. The eldest has no symptoms at all, whilst my youngest son has large, very flat feet and 'slaps' them on the ground when he walks. He doesn't seem to have any problems running around, although he does trip up rather a lot. He has moderate learning difficulties and I've always assumed that his strange gait was something to do with this as up until recently I'd never heard of CMT. Anyway, I'll just have to wait and see what the Neurologist says. - I also called my daughter because I have always thought it is such a lovely name. gfijig <fijiwigged@...> wrote: Welcome , Thanks for introducing yourself. I was diagnosed in 1962 with CMT and I too have the 'feet burning " - have had this off and on since I was 7. It is under control most of the time, but now and then at the oddest times, it surfaces (like when I am in the pool no less!) We have a number of members from the UK and I'm sure they will jump in to say hello. When you are diagnosed with CMT, and have a confirmation, perhaps then is a good time for diagnosing your daughter. I hope you find full of help. ~ Gretchen (Founder-Moderator of ) Send instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Hi , Nice to meet you ! Do you know what type of CMT you have? My Dad was a Pilot in the service Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Hi , I swear sometimes I think I'm reading about myself when I read the posts. I have EXACTLY the same symtoms and recently the cramping. I wake up in the middle of the night with calf cramps and have to get up. Extremely painful. And the past couple of days a pain in my left butt cheek. I need someone to literally punch it out of my butt. Right in the middle of it. Sometimes it's the left sometimes the right one. I didn't know this was part of CMT until recently. Things are getting worse lately. It also feels like my feet will fall off where you bend them (the front part of my foot where you would pick them up). Sometimes I don't even feel like my feet are attached to the rest of my body. I have near sightedness, but didn't put that with the CMT?? It makes sense though. I have to remember not to push myself when I'm having a good day because I pay for it for the next 3 days. I know I'm going to get weak and it stinks. Like today, I want to do alot of cleaning, but if I do, I'll feel lousy tomorrow. A little at a time, but I feel guilty. When he goes to work everyday, and I'm sitting home, if I don't clean or something.....I feel lazy. He's great though and understands. I want him to read more of the posts so he knows I'm not the only one.My e-mail is spoolie4@... if anyone wants to write to me at home. Thanks and take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 BRIAN, Your introduction is inspiring. I forwarded it to my son (32 years old, diagnosed with CMT X two years ago) and my husband. We still look forward to a dream of hope that he can do things to the best of his ability. Tessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hi , I am glad you were not hurt in the robbery. I have had panic attacks for years, oddly enough they have almost stopped now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 Dear Mrs Shrinkydink, []; My name is Dennis, an I can relate to your experinces. Especially the anguish and fear that you experince at the Pharmacy. My wife worked in a bank, on a corner where 2 major streets and 1 entrance to the freeway are. While there, her bank was robbed 5 times. The last robbery was of the most feared kind, called a 'TAKE DOWN'. That is where all the people in the bank are put into the vault, and told to lie on the floor. And weapons were clearly visible. when the police arrived, they had with them their police chaplin, to give counsel to those desiring it. Also, when the FBI showed up, they to offered counseling services. They do understand that being robbed is not a comfortable experince, but the effects can be lessened by talking to a counselor. Yes, it does take time for it to go away, but the worst part of it is the personal violation you feel. My sweetheart could not watch TV shows with violance in them, especially if they showed robberies, after her attacks. And after the 5th, the went into a different career, she became a Medical Records Clerk. , I'm the one in our famiy that has the CMT. It has been basically painless up until 1999, then my world was turned upside down. Pains so bad I couldn't understand where they were coming from. I was drivng truck, then and when these shooting pain attacks came I would grip the steering wheel so very hard, and then kick my right foot against the other side of the cab, trying to create a pain greater than what I was experincing. My doc to me out of my work, she said, 'no more driving'. I was 59. Here in Oregon, companies don't hire you if your that old, so she put me out to pasture, she put me on disability. I've been dead ever since. What I mean, is that I haven't done any work or acts of goodness since then. I feel dead. I feel useless. But this website does alot of good to me and others. HANG IN THERE, THINGS DO IMPROVE AS WE PUSH FORWORD. YOUR FRIEND, DENNIS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 HELLO SUSAN; I AM DENNIS, FROM BEAVERTON; AS YOU KNOW, IN PORTLAND, THERE ARE MORE DOCS, THAN CURES. I HOPE YOU HAVE FOUND SOME KNOWLEDGEABLE DOCS. I HAVE FOUND THE DOC'S AT OSHU, ARE VERY KNOWLEDGEABLE OF CMT. AND I USE THE VA, WHICH LEANS ON THE OSHU FOR RESIDENT DOCS, AND SPECIALISTS. STILL, I GET GOOD TREATMENT. I AM 66 AND I WEAR 'GUNBOAT' SHOES. I DON'T WALK FAR, I USE A WHEELCHAIR OR THE ELECTRIC CARTS PROVIDED BY THE STORES. MY DOC WROTE UP MY PRESCRIPTION FOR DISABILITY, AND IT WAS APPROVED EASILY. I WAS 59, I'M NOW 66. I DON'T GET OUT MUCH, TO CHURCH AND TO THE STORE, WHEN MY WIFE TAKES ME,. i GET LOAVES AND FISHES LUNCHES 3 DAYS AWEEK. THEY ONLY COST ME $2.75 EACH. I GET THE DIABETIC LUNCHES. BUT LIFE MOVES ON AND I'L BE AROUND FOR ANOTHER 20 OR SO, WHAT EVER GOD HAS IN MIND FOR ME. CONTACT ME VIA PHONE,. AND I WILL READ TO YOU WHAT SHE PUT ON THE PAPER. DENNIS BARES Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Welcome Clare, This is Steph in VA. I'm 29 & was dx'd in 1999 when I was 22. Take care, Stephglokay20022002 <glokay20022002@...> wrote: >> Hi Clare,> > I am new to the group myself. All of the e-mail you receive is so awesome! The group has helped me so very much.> I also was born in Texas, Pampa up in the panhandle. I moved to Ok. from Amarillo in 1996. I love the lakes here.....so peaceful.> Welcome and best wishes.> Gloria> > > ---------------------------------> Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ "Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead) AmeriCorps Alums -- We're Still Getting Things Done How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Welcome to . I am , I live in California USA. I have CMT and three of my five children also have it. It is nice to meet you. I hope you continue to enjoy the list. Everyone on the list offers so much and that helps make this a great list. We also have an awesome list moderator and founder in Gretchen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 Hi , Funny how guilt can get us at any age for any reason. Like we actually did something bad to our children on purpose. I had so much guilt over the CMT. I never blamed my parents and I don't think my children blame me but I have guilt all the same. Just so you know guilt can be part of the CMT process:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 Hi , Welcome to the group. I'm sorry your symptoms are getting worse. I think that you should give your husband a chance though. My husband doesn't understand it either, but he knows what it's like to be in pain and hurt. He actually surprised me one day after work with a foot spa that he had gone out and bought for me. Your husband may surprise you if you let him. It's not pity - it's being half of a couple. I bet those twins are cute! Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2006 Report Share Posted November 24, 2006 Welcome to the group, . I liked your email and the way you are dealing with CMT head on. I am from India, 20, and...well 'too happy go lucky to know what else to write here'. Hehe... All I can mention here is that exercising has indeed helped me a lot, too. These days I am looking for a physiotherapist in my town upon my elder brother Sameer's suggestion. He, too, has CMT. That's about it for now Take care n keep smiling Reema Quote Link to comment Share on other sites More sharing options...
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