r/CMT

It’s as close to being actual pharmaceutical grade as possible without actually coming from a doctor. It’s the exact same stuff as the very top level bodybuilders use. This won’t be my first time doing it. I won’t discuss my results from when I did two cycles years ago because I don’t want to seem like I’m advocating for it because there’s no way to describe the effects it had on me without sounding like a series of glowing reviews. There are absolutely dangerous issues it can cause. I am aware of them, and am willing to take the risk. I asked several doctors who would be able to prescribe test to me to “please help”, and that “I preferred the help they could provide, but would be on this stuff regardless of their decision.” They all declined me, but when a perfectly abled actor needs to put on 30lb of muscle in 6 months to play Batman they have no shortage of doctors to give them this stuff, but me with my body withering away “I don’t need to take that risk.” That’s BS I’m trying to squeeze more years out of my life.

Bonjour à tous,

Ma fille de 6 ans est atteinte de la CMT1A, elle a été diagnostiquée il y a un peu plus de 2 ans, à l'âge de 4 ans donc.

Je sais que c'est une "chance" par rapport à beaucoup de personnes qui en souffrent et qui ont mis des années avant de comprendre la cause de leur souffrance.

Je précise que la cause de sa maladie est non héréditaire, sa mère et moi nous nous sommes fait testé après son diagnostic et aucun de nous deux n'est porteur.

Si bien que, même si je connais désormais théoriquement bien la maladie, je ne peux pas comprendre pleinement ce que c'est que de vivre avec.

Donc j'ai plusieurs questions :

-ma fille a parfois des douleurs qui apparaissent de façon fulgurante : tout va bien toute la journée et d'un coup elle ressent une grande douleur, au point de ne plus pouvoir marcher sans boiter. Dans ces moments-là, même un massage des jambes, voire un simple contact sur le mollet, lui fait mal et lui semble difficilement supportable. Est ce que c'est quelque chose qui vous arrive aussi dans votre quotidien ?

-le fait qu'elle ait été diagnostiquée à 4 ans m'interroge. En me renseignant, je vois que beaucoup de personnes découvrent leurs symptômes vers leurs 20 ans. Le fait que pour elle ça ait démarré aussi tôt est il un signe alarmant, dans le sens où une évolution sévère et négative est à prévoir ?

-elle fait des séances de kinésithérapie une fois par semaine (environ 30 minutes) et nous sommes heureux de constater ses progrès. Aura t elle besoin de ces séances à vie ?

-plus généralement, y a t'il des choses que je dois savoir pour la comprendre mieux ?

Merci d'avance pour vos réponses 🙂

Hi, I’m a 25-year-old man with CMT. I’d like to ask about your experience with strength training at the gym. I go swimming about three times a week, using both free-style and assisted methods (kickboard, floatation device, fins, paddles, etc.), and I swim about 1,300 meters per hour.

I’ve been thinking about adding strength training, but I’m not sure how to structure it or whether it’s recommended for people with neuropathy. My goal isn’t to build muscle, but rather to maintain my health and possibly see some improvement.

What are your experiences?

Thanks!

Does anyone else have panic attacks after a draining day/interaction/activity or whatever that could cost you more energy?

In Dec I broke my left calf bone right at the ankle and dislocated the inside at the same time. I had surgery in Feb to repair it. I was on basically complete Bed rest for 6 weeks. Then I started Physical Therapy and have done that for 6 weeks and there wasn't a lot of big swelling until this week. Wednesday morning I woke up to my foot being huge and I went to PT and she made note and I have been keeping it up as much as possible, I went back to PT yesterday afternoon and my foot was 2x as swollen as it was Wed.

But that doesn't seem to be doing much. I take Naproxen 2x daily and Magnesium already. Is there anything else I can do? It is time for me to switch to a Lace up Ankle Brace from the Cam Boot but unfortunately yesterday even the boot was hard to put on. I do several foot exercises and have been icing it for 15 minutes every 2 hours like I was told but don't seem to be helping. 😭😭😭😭

I didn’t realize how bad I was getting into recently when I tried to climb my life stairs and it took three tries to step up onto one of them. It takes a lot to go up and downstairs, so I use elevators normally but it also dawned on me that I have trouble getting from point A to point B a lot more recently than I have before. As I get worse, I’ve noticed that I’ve stopped being able to feel hot and cold on my feet and now my hands. This is just a rant post about the fact that today I burned my hands because of friction. I was sweeping a lot today and because of the repetitive motion, I ripped my skin open between my thumbs and first finger and ended up with a blister and a burn because of sweeping. I didn’t feel it while it was being made, and I still barely feel it as is right now, even though they are covered with Band-Aids and very open and raw. I never realize that everything could cause me to just end up breaking down like I am every single day and feeling completely wiped out over just cleaning the house one time and even then it’s only just sweeping mostly. I take out the garbage at least once a week and just the walk from inside to outside is a lot to handle for me. I am, however, a full-time student and the friction of a pen rubbing against my finger can cause my finger skin to open up, and that has become an annoyance recently. The thin skin is a huge annoyance for me and the constant bruising, and having to explain that all I have to do is walk up a flight of stairs and my knees and feet will bruised just because of that is exhausting. Constantly feeling like I’m going to pass out just by bending over and people thinking that I’m faking because of that is also exhausting. And I’ll stop talking because I know things like this can also be exhausting to read, but I felt like I needed to ramp because I don’t feel the burns between my thumbs and fore fingers, but I know they’re there because I can see them and they hurt occasionally, but not to a point where they actually should hurt and my body should’ve told me to stop and put down the broom.

I have CMT1X and have been out of high-school for one year, I'm relativity capable with only minor tremors and some drop foot. I stay relatively active and can lift 50+ pounds pretty regularly, stand on my feet all day, and walk most of the day. The school seems to have never heard of CMT and is making me go through a bunch of extra documents and doctors visits on top of what I already had to do as a prerequisite. It just feels like they don't want me to come despite having more sedentary programs like IT and design and engineering.

honestly just looking for some advice or anyone who has dealt with something similar. Ive been at this for more than a year and am feeling discouraged, doing the same thing every day and just waiting for papers to process and doctors appointments all the time.

Hey yall so I’ve had this job as a food microbiologist going on 4 years.. my hands have declined so so much I’ve moved departments 2 times in hopes it will be easier on my hands.so many fine motor skills very repetitive. It’s just getting to a point where my hands feel very weak and hurt. It’s really affecting my mental it seems like I can’t do anything with my hands I just hurt and feel weak. It’s hard to enjoy my weekends my hands just get tired and sore from anything. I just bought a house last year I feel lost stuck stressed out I don’t know what to do anymore. I don’t know what job will accommodate my hands and still make around 25 an hour.. any advice yall much appreciated!!

Those who sit for prolonged periods of time at the desk, what chair has been the most comfortable? I’m currently looking at either Herman miller Aeron or Steelcase leap. Open for more suggestions.