Guest guest Posted August 15, 2005 Report Share Posted August 15, 2005 Hi Sally, Was it you that I talked with before ?? Does your son also have Paget's disease? I also live in Ottawa. Bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2005 Report Share Posted August 15, 2005 Hi Bobbie: Yes, I think we played phone tag! No my son doesn't have Paget's... Drop me a line when you have a chance.. 943-8883 Cheers Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2008 Report Share Posted July 18, 2008 Barbara, I live in Hamilton. Mr Nero does for sure. He is at McMaster University Hospital. They have a great clinic for CMT. I get strength testing every year, along with the standard stuff. My family doctor not so much. Although she learns as we go. Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2008 Report Share Posted July 19, 2008 Matt, Thank you for replying. I have CMT 1, deteriorating disc in my lower back and also Pagets disease in lower back. Also osteo-arthritis in my hips and knees. I cannot get replacements because of the Pagets. I saw a neurologist and take Neurontin but he was more worried about the pain in my syatic nerve than the CMT. I have had cortisone shots in both knees. Nothing for my ankles as they say the pain is not arthritis there. My rheumatologist knows nothing about. I wear German shoes or New Balance running shoes with arch supports and also one lift of one inch. My right is now shorter than the left one. We learned about the CMT when my son who had Hodgkinsons disease was given Vincristine. He had to learn how to walk and use his hands all over again. I now know that several of my nieces and nephews have CMT also. Barb Conlin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2008 Report Share Posted July 19, 2008 Barb, sorry to hear about all the additional medical issues. Like CMT is not bad enough. I have diabetes and high blood pressure. Sometimes I wonder about arthritis. I know my mom has Rheumatoid (SP) and I have a cousin at the age of 22 that has it really bad. Some days I think she cannot walk it is so bad. I wonder where my pain really comes from some days. I am crooked as well. One side is lower then the other. My back pain is not too bad yet, but is slowly gets worse like CMT. I too wear New Balance, as most of us do I believe. Since I was 12 my mom started buying them for me. Of course back then they were better quality but cost a lot more. I find the ones today just don't last a long as they use to, but they are cheaper so I guess there is trade offs. Not sure how much CMT there is in my family. My mom was tested and she did not have it. My dad had already passed on so he could not get tested. Although he was diagnosed with rainoides(SP) so I am thinking that was a mis-diagnosis and he really had CMT. None of my siblings show any signs, although my one brother seems to have balance issues and skinny legs. Although he is skinny all over (hehehehe) not like me. I wish he would go get tested but he is in denial that he might have it as I think he does not want to get like me. Can't blame him really, I just would like him to do it so then he can look out closer for this kids. Although I am watching them anyways. I think my one daughter has it although I have not had her tested at this point. She is 8. I have been to Ottawa once, and I think I will be going once more this year for training at Global Knowledge. Its a beautiful city, can't wait to go back. We went for a fall trip when my 8 year old was just a baby. Had a great time. Take care, Quote Link to comment Share on other sites More sharing options...
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