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