It hurts and I am so dishearten when I see my little nephew living with this each day as he grows. The poor boy still think he is normal right now and didn’t question his difference. I can’t imagine when he starts to realize he is not the same as others in school, and worse when other kids start to question him about his walking posture. Just today, I had to help clean his fingers with my hands through the running water. His fingers were all curled up, and he doesn’t know to use his own fingers to rub off the dirty stuff. I was tearing inside, and now in the middle of the night, I am watching this, tearing in my bed. Imagining what is ahead of his life and what his future may entails. 😢
I was born with cmt. From my dad side. He has it and three of my sister’s also do. Its mainly my feet and legs. My feet turn inward so it looks funny to people when i walk and especially run. Im 27 now. No surgeries since my parents always denied any type of surgery for me as a child. If i do day any thing where I’ve stayed on my feet for only minutes, let alone hours at like work. When i was younger. I didn’t feel much pain. All through middle school i walked home and to school and as to other friends houses. Wasn’t till sometime after highs school. Where every night i would feel pins sticking me on the pressure points where i bare my entire weight. Which is a small ball on the side of my foot. Which is out it bends and causes me to fall over simple pebble, sidewalk crack, and acorns. Constant foot rolls and randomly tripping on nothing would always happen. Especially walking to and from school. Where the neighbor i live in has shit sidewalks. And when it would just to uneven grass or just straight dirt. Those where my biggest enemies. Where only flat and solid was where i stood a chance of not embarrassing myself.
Wish thier way a cure my life is a living hell and I’m only 18 ..been going thru severe nerve pain for about a 2 years now.. it’s sad that thier no cure . No medication has helped me .. I’ve tried duluxatine ,gabapentin and I take 4 ibuprofens a day and I get no sighn of relief… idk what to do my life is miserable I can’t even work . I can’t even take my pups on a walk… plz pray they find a cure …
Try Ayurvedic treatment once Google it, looks like some Ayurvedic treatment is available for the disease I am not sure whether it will work or not but it's worth giving a chance
i have cmt amd i am ten and gonna have a sergery in a year on my right foot to remove the arch and make is less tight it’s bean very hard i have to drive two hours to get to the hospital and gat a afo i am vary very scared to get the surgery i am scared because me dads right for after about 5 surgeries and his foot looks like a melted gumi worm
I’m 14 and I have this it started at around the age of 3 it’s a living hell when I fall I can’t stand back up when I lie down I feel uncomfortable with my legs I can’t hold balance or run I can’t jump or play sports my dream was to be a soccer player.. at 7 years old I also dreamed of being a doctor and treating myself since no one could find a treatment for me..
@Zakkgames164 it’s so sad having dreams and having people say “accomplish your dreams no matter what” but no matter what we will do it’s not gonna go away or get better it only gets worse in time
@@Life_with_rare_disease I don't know which kind. But I can tell you that she has balance issues, wears ankle braces and wrist braces, has trouble walking. When she was younger, she was clumsy, but thought it was because she was tall ( 6'2" ). I sent her this , but didn't hear back from her. Long story short version. My brother recently died and she is being petty.
@@gbosearcher-3686 well its good to know which type it is. This will help in tracing the scientific research towards its treatment in the future. This can be checked through a simple test of Axom sequencing. Although there is no treatment available right now but researches are going to regrow shwann cells in the body. For more information watch shorts on my channel
@___SM07 It's understandable to feel uncertain, but it’s great that you're hopeful. Surgery can be a big step, but it often leads to improved quality of life. Wishing you the best outcome and a smooth recovery-stay positive! 🌟
@@MedicalCentric Thanks so much for your appreciation 🙏❤️I have problem with foot drop and both feet toa drop as well.Its not working but doctor say that's he can cure myself.Lets see but I am afraid little bit too because people told me that is a complicated surgery.Lets me guide about as well please 🥺
Geez. I am 65 and have all the symptoms they talk about here on this video. I have stayed away from doctors, practice yoga every day and live my life. I haven't gone to physical therapy or occupational therapy. When I need to find a way to do something, I do it. If you focus on something, you become it. If you see yourself as poor me I have this disease, then you're not going to be happy. You are not a victim! Stop focusing on your disease and live your lives. Just get on with it. Yay I fall sometimes; Yay I can't run. Yoga helps Immensely with balance, gait, movement and so forth. Staying thin helps. I am plant based. Fat leads to joint problems and more muscle loss. Get thin and remain thin. Be thankful for what you have folks!
Yeah I've been told to watch out for scrapes and cuts in my lower legs so they don't get worse. But I was never told that lyme disease, tick diseases, environmental illnesses can also worsen cmt symptom. Cmt is not a disease, it's a symptom of a hereditary long haul environmental illness that cause demyelinating peripheral nueropothy. This medical system is solely just ocd in symptoms. It's not a disease. Well I have a tick disease, mold of long haul, just like the one that caused cmt which has worsened my cmt and these Environmental illnesses do worsen cmt symptom. The numbness that I had in my lower legs is going away by using supplements, nutritional ivs and detoxing. Stem cells can reverse, repair these nuerological problems.
@@user-xq2zn8bu9q Hi. I've had cmt since I was born and my lower legs and feet were never numb or tingly. Then as I got older I ended up getting tick diseases and mold and when these were never diagnosed and turned nuerological yrs later and then my lower legs and feet got numb and my cmt got worse. I'm seeing now a holistic naturopath clinic whi found the environmental illnesses. Main stream medicine nuerology does not have the testing or they won't look for causes. Yes stem cell treatment can reverse nuerological problems. That's what my holistic drs are saying and treating other nuerological disorders. A hereditary cmt is a symptom of an environmental illness that happened many many decades ago in my family.
Thanks for sharing, I had no issues until I turned 40 and fractured my ankle due to instability and just lived with it 20 more years, I finally got surgery but the lower leg pain is still bothering me…
Charcot-Marie-Tooth (CMT) disease is a hereditary condition, and it is not caused by jumping on a trampoline or any other external factors. CMT is a genetic disorder that affects the peripheral nerves, leading to muscle weakness and sensory loss in the extremities. It typically runs in families and is not related to injuries or accidents. If you have concerns about your health or believe you may have CMT, it's essential to consult with a healthcare professional for a proper diagnosis and to discuss your symptoms and medical history. They can provide guidance and information about managing the condition if it is indeed CMT or determine any other potential causes of your symptoms.
Howard Tooth was not black. And Pierre Marie was not a blonde woman. Maybe less woke illustrations of the three scientists would be a good place to start.
![Charcot Marie Tooth Disease - Symptoms & NEW Treatments! [2024]](http://i.ytimg.com/vi/HOebXZIZT4Y/mqdefault.jpg)
![Charcot Marie Tooth Disease - Symptoms & NEW Treatments! [2024]](/img/tr.png)
I will pray for those who have CMT AMEN
I have cmt 1a and 2a
Thank you
Thankyou
thanks i have cmt 1b mpz
I believe I have CMT 1a or 1b. I haven't gotten an official diagnosis yet, but that's what I think I have.
I have this (I'm 14 years old) but I just got approved for a big surgery to help extend my tendons next month so yay!
I wish you good luck and quick recovery.
@@theloftiestlemon Did the surgery help? TY for sharing.
What county are you from
I'm 50 years old and was diagnosed when I was 14. Had 2 triple bone fusions and pins in toes. I really wish you the best. You're not alone.
@@Yesitsme18 If you tell your life history, what kind of problems did you face at what age?
It hurts and I am so dishearten when I see my little nephew living with this each day as he grows. The poor boy still think he is normal right now and didn’t question his difference. I can’t imagine when he starts to realize he is not the same as others in school, and worse when other kids start to question him about his walking posture.
Just today, I had to help clean his fingers with my hands through the running water. His fingers were all curled up, and he doesn’t know to use his own fingers to rub off the dirty stuff. I was tearing inside, and now in the middle of the night, I am watching this, tearing in my bed. Imagining what is ahead of his life and what his future may entails. 😢
I bet he can't wait until he high.
Glad to see representation.. was diagnosed almost 15 years ago
I was born with cmt. From my dad side. He has it and three of my sister’s also do. Its mainly my feet and legs. My feet turn inward so it looks funny to people when i walk and especially run. Im 27 now. No surgeries since my parents always denied any type of surgery for me as a child. If i do day any thing where I’ve stayed on my feet for only minutes, let alone hours at like work. When i was younger. I didn’t feel much pain. All through middle school i walked home and to school and as to other friends houses. Wasn’t till sometime after highs school. Where every night i would feel pins sticking me on the pressure points where i bare my entire weight. Which is a small ball on the side of my foot. Which is out it bends and causes me to fall over simple pebble, sidewalk crack, and acorns. Constant foot rolls and randomly tripping on nothing would always happen. Especially walking to and from school. Where the neighbor i live in has shit sidewalks. And when it would just to uneven grass or just straight dirt. Those where my biggest enemies. Where only flat and solid was where i stood a chance of not embarrassing myself.
Wish thier way a cure my life is a living hell and I’m only 18 ..been going thru severe nerve pain for about a 2 years now.. it’s sad that thier no cure . No medication has helped me .. I’ve tried duluxatine ,gabapentin and I take 4 ibuprofens a day and I get no sighn of relief… idk what to do my life is miserable I can’t even work . I can’t even take my pups on a walk… plz pray they find a cure …
Try Ayurvedic treatment once
Google it, looks like some Ayurvedic treatment is available for the disease
I am not sure whether it will work or not but it's worth giving a chance
I know how you feel. You are not alone. Sending love to you.
My 6 year old has just been diognised with this
Have a look at alpha lipoic acid for the nerve pain
@@Brandonson80thank you so much u are not alone aswell always know that.❤
God bless u Aj ❤❤❤❤❤❤❤❤❤
i have cmt amd i am ten and gonna have a sergery in a year on my right foot to remove the arch and make is less tight it’s bean very hard i have to drive two hours to get to the hospital and gat a afo i am vary very scared to get the surgery i am scared because me dads right for after about 5 surgeries and his foot looks like a melted gumi worm
I’m 14 and I have this it started at around the age of 3 it’s a living hell when I fall I can’t stand back up when I lie down I feel uncomfortable with my legs I can’t hold balance or run I can’t jump or play sports my dream was to be a soccer player.. at 7 years old I also dreamed of being a doctor and treating myself since no one could find a treatment for me..
@Zakkgames164 it’s so sad having dreams and having people say “accomplish your dreams no matter what” but no matter what we will do it’s not gonna go away or get better it only gets worse in time
@Zakkgames164 real
😢
My sister in law has this disease. A terrible disease. Took years to figure out what exactly was wrong with her.
I hope she is getting adequate treatment now.
@@MedicalCentric She is. She has a twin sister, who doesn't have it. In fact, no one in her family has ever had it.
Plz tell which type of CMT she has.. and which Gene is affected? I also have CMT.
@@Life_with_rare_disease I don't know which kind. But I can tell you that she has balance issues, wears ankle braces and wrist braces, has trouble walking. When she was younger, she was clumsy, but thought it was because she was tall ( 6'2" ). I sent her this , but didn't hear back from her. Long story short version. My brother recently died and she is being petty.
@@gbosearcher-3686 well its good to know which type it is. This will help in tracing the scientific research towards its treatment in the future. This can be checked through a simple test of Axom sequencing. Although there is no treatment available right now but researches are going to regrow shwann cells in the body. For more information watch shorts on my channel
I have CMT problem from So long and now my Doctor say to for surgery.Lets see what happen next.but i hope for better.
@___SM07 It's understandable to feel uncertain, but it’s great that you're hopeful. Surgery can be a big step, but it often leads to improved quality of life. Wishing you the best outcome and a smooth recovery-stay positive! 🌟
@@MedicalCentric Thanks so much for your appreciation 🙏❤️I have problem with foot drop and both feet toa drop as well.Its not working but doctor say that's he can cure myself.Lets see but I am afraid little bit too because people told me that is a complicated surgery.Lets me guide about as well please 🥺
Hi actually i dont know your name sweety can i ask you some question about this because my two litte kids diagnosed it@@___SM07
Geez. I am 65 and have all the symptoms they talk about here on this video. I have stayed away from doctors, practice yoga every day and live my life. I haven't gone to physical therapy or occupational therapy. When I need to find a way to do something, I do it. If you focus on something, you become it. If you see yourself as poor me I have this disease, then you're not going to be happy. You are not a victim! Stop focusing on your disease and live your lives. Just get on with it. Yay I fall sometimes; Yay I can't run. Yoga helps Immensely with balance, gait, movement and so forth. Staying thin helps. I am plant based. Fat leads to joint problems and more muscle loss. Get thin and remain thin. Be thankful for what you have folks!
lol. hey there. good for you. feel better?
@@Navigation24-7Yep, it sounded patronising. Makes a cocktail of yoga, thinness + vegetarian diet a panacea for all ailments.
Myelin is not the same as melanine.
And they kept mispronouncing it.
Yeah I've been told to watch out for scrapes and cuts in my lower legs so they don't get worse. But I was never told that lyme disease, tick diseases, environmental illnesses can also worsen cmt symptom. Cmt is not a disease, it's a symptom of a hereditary long haul environmental illness that cause demyelinating peripheral nueropothy. This medical system is solely just ocd in symptoms. It's not a disease. Well I have a tick disease, mold of long haul, just like the one that caused cmt which has worsened my cmt and these Environmental illnesses do worsen cmt symptom. The numbness that I had in my lower legs is going away by using supplements, nutritional ivs and detoxing. Stem cells can reverse, repair these nuerological problems.
Can they. I have CMT Type 1A & I have numbness in my lower legs & left hand. 😢
@@user-xq2zn8bu9q Hi. I've had cmt since I was born and my lower legs and feet were never numb or tingly. Then as I got older I ended up getting tick diseases and mold and when these were never diagnosed and turned nuerological yrs later and then my lower legs and feet got numb and my cmt got worse. I'm seeing now a holistic naturopath clinic whi found the environmental illnesses. Main stream medicine nuerology does not have the testing or they won't look for causes. Yes stem cell treatment can reverse nuerological problems. That's what my holistic drs are saying and treating other nuerological disorders. A hereditary cmt is a symptom of an environmental illness that happened many many decades ago in my family.
Thanks for sharing, I had no issues until I turned 40 and fractured my ankle due to instability and just lived with it 20 more years, I finally got surgery but the lower leg pain is still bothering me…
I wasn't born with but i jumped from a trampoline when i was 2 and now i have it
Charcot-Marie-Tooth (CMT) disease is a hereditary condition, and it is not caused by jumping on a trampoline or any other external factors. CMT is a genetic disorder that affects the peripheral nerves, leading to muscle weakness and sensory loss in the extremities. It typically runs in families and is not related to injuries or accidents. If you have concerns about your health or believe you may have CMT, it's essential to consult with a healthcare professional for a proper diagnosis and to discuss your symptoms and medical history. They can provide guidance and information about managing the condition if it is indeed CMT or determine any other potential causes of your symptoms.
I got this illness. Pain 24/7. Only stem cell treatment
Have you tried stem cells? Did insurance cover?
@@PBuchanan175 Insurance doesn't cover. I've tried. It works amazingly!
Your didn’t mention 1X.
I have cmt just had a op to correct my feet
I wish you a swift and smooth recovery from your foot surgery. ❤️
"melanine sheath"???
The melanin sheath is not associated with Charcot-Marie-Tooth disease (CMT); rather, CMT affects the myelin sheath, which insulates nerve fibers. ❤️
Why did you leave cmt 4C out?
Howard Tooth was not black. And Pierre Marie was not a blonde woman. Maybe less woke illustrations of the three scientists would be a good place to start.
I’m 31 going on 32 with this issue and honestly CMT has ruined my life
I'm truly sorry to hear that you're facing this challenge with CMT; your strength in sharing is admirable. ❤️
My-el-in not melanin