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6 Responses

  1. I am on of the lucky CMT carriers. I thought a few years back-power and knowledge are key for me to take control of this problem of mine (to much Oprah that week). I made the appointment with the specialist, went through the hour of shocks going up my legs all for well blah blah blah blah. That power and knowledge is still in the folder of the “specialist” office. It wasn’t spoke about again until I went for my yearly visit with my family doctor-she told me I have CMT 2a ( i think), showed me the paper work with a bunch of mathematical errors and as I do often said forget it. I need to start truly understanding the CMT as I am now 34 have a beautiful son and want to be as healthy as I can for both of us.

  2. Hi Linda and fellow readers
    Many thanks for your site and the mine of information therein. I am a 63 y/o woman who, like you, has been extremely frustrated by the medical profession. I have advanced CMT symptoms and feel entirely let down by the Australian medical system, despite it being acknowledged as world class. Recent hip replacement surgeries hastened a respiratory decline…post-surgery research indicates that a ‘contraindicated anaesthetic’ was used,thus, I believe, triggering a rapid decline. My doctors were dubious,at best, whenever I suggested it, even my neurologist, a Professor of some standing, virtually denied the correlation, until he found an excellent article on CMT and respiratory problems. I have yet to see my Respiratory Physician which is 2 days henceforth and armed with new LFT’s & sleep studies I am hopeful of a more effective therapy.As some of you well know, this is an eternity when respiration is a constant focus. I urge every CMT sufferer to be pro-active in CMT research, as sadly it has fallen to us by default. Regarding your pain and resultant sleeplessness Linda, I abandoned opiates, as I have violent reactions to them but have finally found relief from Endep (Amitriptyline) and find them blissfully effective. I take 10mg but it is available in stronger dosages. It may not help but for those who like me, have severe reactions to meds. they are a Godsend. Thanks again for your wonderful website Linda, which I am sure, must involve much personal effort & your precious time but please know it is truly appreciated and I thank you from the bottom of my heart. Colleen

    • Colleen, I agree with you whole-heartedly about the Australian medical system. It is so disheartening that you go to a GP & they wouldn’t have a clue what is CMT. I feel like I am the medical practioner telling them what is going on! I am with you in thanking Colleen as I have only just found this site. Very imformative & it is really nice that you are not alone & that other people have issues too. Thanks everyone.

  3. Trish, if you are not already aware of the site, CMTUS is yet another very informative & wonderful site. Regards

  4. My mother and I are just the two out of twelve CMT carrier in our family and have been feeling blessed to be a part of the CMT group. We suffer from type 1 CMT, inherited from my great-great grandfather. We have been living life on a wheelchair but pain free until few months back when my mom felt that her body was swaying uncontrollably, leading her to suffer from acid reflux. She was admitted to the hospital last month because she was having a hard time breathing. The neurology said that the cause to her acid reflux was nerve cramps. Her body was really weak and her muscles keep on cramping when she uses them. The neurology prescribed her on Lyrica 75 mg twice a day, and 50 mg before bed. I was wandering if the Lyrica actually helps and if she needs to be on Lyrica on a long term basis.

    • Hi Hannah–it sounds as if your mother might have vertigo which can be part of CMT for some of us. That would account for the swaying feeling. We can also have problems with proprioception which is our ability to tell where our body is in space. A personal example is that I must look at my legs and feet to make sure they’re inside the car before I shut the door as I cannot tell without looking. You say she was admitted to the hospital because she was having a hard time breathing. I’m wondering if the doctor has checked her out for diaphragm paralysis? It is fairly common with people who have CMT and can result in difficulty breathing especially when lying down as we no longer have the benefit of gravity to help our diaphragm at work when we are horizontal. Lyrica is usually prescribed for nerve pain and I have no experience with it regarding muscle cramping but someone else reading this might. Lyrica does not always agree with everyone. If she is not getting results from it and feels worse on it she should talk to her doctor. To find out more about CMT, I will suggest that you search the journals online including pubmed and also join CMTUS, a Facebook forum group with more than 5000 people on it, all with CMT. Thank you for reading my blog and I wish you, your mother and the rest of your family the best of luck for the future.

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