Charcot-Marie-Tooth UK
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New to CMT

After two years bouncing from 1doctor/specialist my primary care doctor sent me to the University of Florida. There a wonderful neurologist quickly diagnosed me with CMT. That was my beginning of knowing what I was dealing with. I have been bed-ridden for over 2 years using a walker or wheel chair. A weekend staying in bed with a good book & hot cocoa is a vacation. Two years of it is hell. I must admit pain meds and a loving supportive husband were the only way I survived. I haven't driven in over 2 years. Hubby does all shopping, cooking & cleaning I can't do. Shortness of breath led me to a pulmonologist. Only thing he discovered is that I have sleep apnea which is now taken care of with CPAP. my lung capacity is 84% which doctor said is ok for my 69 years of life. But let me walk to another room in house and I am gasping for air. Scary. As a child I was always described as weak, poor child...I felt different when I didn't want to be. Just a few years ago I tripped on a speed bump in parking lot & tore my Achilles tendon which took 2 surgeries, months of casts and getting married in a wheel chair (decorated in satin ribbons). lol. About 9 months afo I had a spinal cord stimulator implanted to "interfere with" peripheral neuropathy pain in my feet. It has not been a miracle, but does help some and I am taking less pain meds each day. I also have rheumatoid arthritris. Iwas an avid crocheter but had to quit. I couldn' feel the tension of the yarn in my hands. So now I read, watch TV, and can get lost in Pinterest for hours. Ask me why I don't get out of bed and sit with my hubby watching TV or eating at the table. That's where fatigue comes to call. I hate "him". Then shortness of breath follows, hate "her" too. I had had a good adult life, great career and hubby for 35 years. Now after being widowed, retired and moving to sunny Florida I never thought I would go downhill like this. My wheelchair wedding was a 2nd chance for love & happiness, which until these last couple of years have been wonderful (even rode on his Harley). Tomorrow is my 1st appointment to be fitted for AFOs. So hoping they will help with my lack of mobility. First goal, not having to sit to brush my teeth! Happy to have found all of you. I am learning from each of you. Number one. I am not alone.

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Hi, Beachwine,

Well, a diagnosis of CMT certainly isn't great but you must be sort-of glad/relieved to know what has been causing your problems , and that it is a recognised actual disease with a name (albeit an unwieldy one) and real physical cause.

It is really unlucky that it has accelerated its progression relatively suddenly and recently, though. But the stress of losing your husband of 35 years and moving ( a very long way?) may well have contributed. Having rheumatoid arthritis to put up with as well is pure bad luck.

It is so annoying - and upsetting - to have to give up an activity you really enjoyed especially as crocheting can be done sitting in bed. I am still sad about giving up playing the recorder as I can't feel the holes any more, so my fingers don't cover them properly. I was never really good (fingers couldn't move fast enough) but it gave me a lot of pleasure. So did going for country walks with my husband....

I suppose you and I have to be glad that we managed to lead normal-ish lives and pursue careers (mine is sedentary and home-based, so CMT-friendly) and marry good husbands (I was married for 46 years) .

I think it is wonderful that you have found a good, kind man who clearly loves you for yourself. Living alone with CMT certainly has its drawbacks.

I hope you have a good orthotist, and that your AFOs will help you regain some mobility. Best of luck !

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Thank you so much for your reply. I'm sure we'll bump into each other again here on different topics. Again thx for the greeting my kindred spirit.

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Hi Beachwine, I can so remember being pleased to know at least my symptoms weren't imaginary when I was diagnosed. I was a social worker which I loved but I had to give up my career too, though I still sit on foster panel occasionally. I also had to give up knitting fair isle in naturally dyed wool but now I write novels instead about social work, CMT etc. I suppose when one door closes another opens. How sensible to marry someone with a Harley & make a satin wheelchair!! You sound like my sorta gal! xx

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Hi beachwine , I like you also have R/A This came before Cmt it took 6 years to be diagnosed with R/A and then many doctors after that for the Cmt . I am the youngest of 9 children and my Dad so kindly said I was the runt of the litter!! , I was always falling always clumsy , walked on my toes always classed as the weak one but luckily I have a very determined nature and wouldn't give in and whatever difficulties I had over the years I just thought was me being me until it hit me when I was 44 and bang thinks became a lot more difficult I've always worked and had jobs that have been physical I had a cafe for years and then a pub but I couldn't hold a glass in my hand and fill it from a pump and there were so many other things I couldn't do I thought of stopping working but luckily my son bought a pub with a function room so it meant I could then organise weddings christening and such and working with family they understand the bad days when I have trouble standing and in a lot of pain , I also live on my own which can be tricky sometimes but I manage when I'm finding it hard to hold a pan to cook then I don't I will have a sandwich when I can't do a button then I will wear something with none . When I came across this site I spent ages reading the letters and their are some really brave people on , I count my blessings for the things I can do . I wish you well take care

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Pixie, thanks for your reply. When I saw the neurologist that finally diagnosed CMT I thought it was my arthritis that made me stop crocheting. I was wearing an unbuttoned jacket that day. She said "let me see you button your jacket". Sure no problem I thought. Oops, couldn't do it. She said it's the CMT not the arthritis. No wonder my closet is full of pull over blouses and sweaters. Like you I do what I can when I can. Good days, bad days, I'm learning to cope. Just got home from orthotist. AFOs and orthotic arch supports being made. I'm so hoping I will be able to balance and no longer need the walker.

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Aww sending you the best of luck that you will soon be on your feet .

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Thx Pixie. I feel so much better just getting the support of you and others on this site.

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