Hi, my name is Snowy2017. I'm here because I have anxiety about having Charcot-Marie-Tooth Disease which is a Neuromuscular disease. It is very frustrating because I have a difficult time accepting that I have it and it is going to affect my ability to do many things as time goes on.
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Hi, my name is Nisey1972. I'm here because
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I was recently diagnosed with Charcot Marie tooth disease and I was wondering if anyone else has more pain and disability on one side of the body than the other. I was also diagnosed with Psoriatic Arthritis, wondering if it is the combination of the two that makes my left side so much worse than my right or if it is mainly the CMT? Any thoughts?
My mom just has X-rays taken of her shoulders because they have been causing extreme pain in her arms. The doctors basically said her shoulders are so bad from arthritis that she’d need to have replacement surgery. The recovery stage involves not leaning on her shoulders so they told her that she does not qualify to get surgery because she is chair bound. In other words she is going to have to live with the pain for the rest of her life. Has anyone experienced this before? I just find it crazy that in today’s world, they haven’t figured out a way to be inclusive when it comes to helping people like my mom. Anyone have any thoughts or any advice on where to go from here?
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Has anyone else here caught COVID, and found the progression of their CMT pick up in speed? I had COVID a little over a year ago, right at the start of 2022, and while I didn’t get that sick, this past year my levels of neuropathic pain have really increased quite a lot, and I’ve definitely noticed that I’ve lost more muscle in my lower legs than I would have expected to over one year, when I’ve made sure to continue to use those muscles as much as I can bear. I also have started to have serious cramping in my hands several times a day.
Last I looked into Charcot-Marie-Tooth and COVID, there wasn’t really any information beyond ‘probably not a great combination’, so I’m wondering if there’s anyone with first hand experience with all this.
I’ve heard COVID referred to as a stress test on your body— any conditions you were unaware of will be brought out so you are aware of them, and any conditions you already knew about or had symptoms of will be made worse, which really does feel accurate for what it’s been like for me this past year
#CharcotMarieToothDisease
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Hi, my name is Kiakgrl925. I'm here because
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Hi, my name is Lainey. I'm here to share experience.
#MightyTogether #SpinaBifida #charcot-Marie-ToothDisease
Hi, my name is Stanton2640. I’m new to The Mighty and look forward to sharing my story.
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