Charcot-Marie-Tooth Disease

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Charcot-Marie-Tooth Disease
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One side worse?

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 was told she doesn’t qualify for shoulder replacement because she is in a wheelchair. #Advice #GettingHelp #CharcotMarieToothDisease

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

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Food for thought

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


Constant suffering with no answers #CharcotMarieToothDisease #ChronicPain

This is my first post. My job is getting sick of me not being able to work. Without my job I lose healthcare to treat whatever this is causing my body to shut down. My fiance is sick of me being negative and has thoughts of leaving me. I understand why he would. I don't even want to be with me anymore. My body is attacking every bit of it piece by piece. Numbness in leg and foot is how it started 6 months ago. Then lower back pain that shot from my bottom pelvis to my keck. Found out its 2 herniated disc's abs spine degenerative plus blocked nerve pathways. Broke both my feet falling a month ago. What should've been a sprain turned out to be both ankles and the bone on the outside of my foot. Had 12 out of 100 vitamin D levels. Blood work is positive for autoimmune deficiency but no one can figure out what kind. I'm seeing a neurologist, cardiologist, orthopedic, and spinal doctor. My ortho suspects Charcot-Marie-Tooth but i can't find a neuromuscular doctor with availability. I just had a steroid injection on my lower spine to heal my herniated disc. But after the fetnyl wore off I'm back in the same pain. Unable to sleep, barely able to work and can't stay positive to keep my family happy I feel like my body is slowly dying and I should be in a nursing home. I'm 44 years old. Yes I spent 15 years working in restaurants trying to raise my kids on my own. Dealing with 12 hour shifts hard labor and now I'm paying the price. I can't seem to get my fiance to understand how hard this is to cope with. And just faking a smile feels impossible.

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