Charcot-Marie-Tooth Disease

Hi, my name is Nisey1972. I'm here because

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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?

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
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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.
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Hi, my name is Stanton2640. I’m new to The Mighty and look forward to sharing my story.

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So I've finally gotten a good gp, they listen and they believe CMT could be a real possibility. I also have EDS and my mobility is really effected. I use a wheelchair outside and a stick inside, now going to a crutch. I just want to know if it's CMT. I have so many symptoms and they are getting worse while many scratch their heads. I've been told by a neurologist is not MS but your reflexes are bad, drop foot, weakness, feeling like water is trickling down my legs and hands, pain and cramps and tremors. I love art but my hands are getting worse. I just needed to vent really. I hope they work it out but I know at 26 my life mobility wise isn't getting better and won't, whether it's CMT & EDS or just EDS... #EDS #CharcotMarieToothDisease #CMT #MOBILITYISSUE #Wheelchair #WheelchairUser #tired