Peripheral Neuropathy

[sentisav]

There are certain neurological causes plus it can be genetical ... for this demyelination of peripheral nerves that lead to muscle atrophy can be one of the cause ...please check it with neurosurgeon / neurologist ..

[IRISHTHUNDER22]

I was diagnosed with peripheral neuropathy in April of this year and tests later revealed I have a very, very rare form of Charcot Marie Tooth's disease. I am 23 years old and am expected to be in a wheel chair within a year. It is effecting every part of my body. This is such a horrible disease.

[jhad1harold]

i have Peripheral Neuropathy since i was born but my foot does not look like that but i walk almost the same as he is. i'll pray for you buddy

[dannysmother]

@jhad1harold thank you. God bless you

[jhad1harold]

@dannysmother YOU TOO

[MrVanngiovi]

@jhad1harold

You are still very much lucky because you can walk without using any crutches, i was a polio victim since 6 months young, i used to walk like you before, the only difference is only my left leg is affected by polio. I can walk before but when i started using a pair of crutches when i was 9 yrs, and years passed i realized that i cannot use my left leg anymore, its useless now and my toe is going curve i cannot manage to make it straight.

[CelebritiesSuckAss69]

@jhad1harold I started getting neuropathy 4 years ago, I'm 28 now and I wanted to ask what could cause this without it being diabetes or hypoglycemia? I didn't take any kind of medication they mentioned below and I never suffered an injury. It mostly revolves around what I eat. I also suffer from loss of vision which is so strange because my blood work came back perfectly and my blood sugar never spikes. Is there anything you can tell me that would help me out? I would really appreciate it.

[CelebritiesSuckAss69]

Why would food cause neuropathy if your not even diabetic? My blood sugar never spikes it's always perfect and I'm losing my vision. 

[pechoja]

My peripheral neuropathy started when I was placed on statin drugs. Muscle cramping during the night is a sign of the beginning of damage to muscles and nerves. Could not turn a door knob to open a door. Doctor did not know the side effects and told me to keep taking stain drugs cause cholesteral too high.

I finally took myself off the drug when urine got dark and brownish and stronger odor. Wrists improved, but feet have not an have gotten worse.

Beware statin drugs. Can cause death.

[tickyul]

@pechoja Yep, the side effect of the poison called Statins is very much downplayed. You see, most people do not report there problems, they just go off the drugs like any sane person would. This crap put my dad in the earth about 10 years prematurely via a massive bleeding stroke.

[dannysmother]

I contacted Allison Moore, who has a foundation for CMT research and she says it's listed as a neurotoxin for CMT. In the list of medications that trigger peripheral neuropathy.

[tickyul]

@dannysmother Good job, that stuff is toxic....even to healthy people. There is a Show on Animal Planet right now (Saved). Guy has CMT and ended up with kidney failure. I think it was probably due to him working out too much......which caused muscle breakdown (common in people with CMT) and this eventually wrecked his kidneys. Before I was Diagnosed with CMT1A the doctor though it was Carpal tunnel.....he gave me B6, about 30mg....which is contraindicated for CMT...wow, that put my body on fire.

[dannysmother]

I contacted Allison Moore, who has a foundation for CMT research and she says it's listed as a neurotoxin for CMT. In the list of medications that trigger peripheral neuropathy.

[tickyul]

@dannysmother And yes, Statins are known to cause permanent nerve damage, very hard on the Myelin Sheath.

[CelebritiesSuckAss69]

Just pray. Pray. 

[CelebritiesSuckAss69]

I cried.

[Kittencuddler]

My feet started doing that at age 30! Started with swelling, then bowing of both feet, then both feet are locked, can not point my feet or side to side, I can only pull them towards me, then got nerve damage in both feet & legs, and then got arthritis, wow he walks like me, but I walk better, seen 10 orthopedic drs. They have no idea how it why this happened so quickly!! Been to all top hospitals, John Hopkins, George Washington, mercy, Maryland, no luck! :( have to use a cane. What does this b

[im1asshole]

cool shorts man...

[yus87smart]

is that drop foot gait?

[tomcamp6023]

Most Doctors suck. They don't know anything. They are in it for the money. Best to eat and live a good life because most doctore SUCK!!

[Appalachian85]

@tomcamp6023

I've been through a medical nightmare myself for the past year and I agree. Doctors don't know a thing and if they did they certainly would only be interested in your money. Don't EVER hurt your back people, it aint worth it, and there's practically NOTHING that can be done to heal the injury. Most doctors will recommend a goofy therapy and jack you full of pain pills and make an appointment for you to come back and give them some more money! Be well.

[MegaBuzz420]

Wow this is helping so much...I don't have hereditary peripheral neuropathy but I do have it from HIV/AIDs. I was very depressed thinking that I was the only one with the high step and numb foot. Thanks for the post.

[tickyul]

@MegaBuzz420 I have Cmt1a, lots of damage to nerves all over my body. Mild nerve damage symptoms are usually tingling, numbness, weakness. Severe damage usually includes burning pain that at times will not go away, feels literaly like somone if holding a flame to the effected area. High doses of Vitamin c seems to help me and others quite a bit.

[4chango]

@MegaBuzz420: We will be placing a naturopathic approach for Neuropathy on both the Hevnawe Channel and the 4chango channel in the comment section.

[MegaBuzz420]

Wow this is helping so much...I don't have hereditary peripheral neuropathy but I do have it from HIV/AIDs. I was very depressed thinking that I was the only one with the high step and numb foot. Thanks for the post.

[justin111379]

This all scares the crap out of me. I have CMT2 and gave it to my daughter.

[tickyul]

@justin111379 Sucks, I have Cmt1a, has gotten a lot worse in the last ten years (i'm 44). I got diagnosed at 40, before that I would tell the doctor about the severe burning pain I had in my hands and feet....they would just roll their eyes.

[destroyaer]

welcome in ghe club i have the same thing

[dbaile2]

I have the same condition It can be helped with a subtular Implant which I have got on my left but not my right foot..it is a very disabling condition....

[FrogsRFriendsNotFood]

from the way this boy is walking it really does look like pheripheral neuropathy, i have it and i walk even worse but on my good days just the same. it looks like he's walking from lifting his knee's.. the same as i.

[genluxuria]

Friends with Charcot Marie Tooth on facebook

This page was created for everybody with Charcot Marie Tooth who wants to shear Their own experiences and wants advice on how to deal with this condition.

To found the page make a search on facebook, amigos con charcot marie tooth.

[PERMARY100]

Hola soy una mujer de 30 anos con neuropatia periférica de nacimiento y camino como su hijo pero nunca he usado ortesis veo que a el le funcionan bien quisiera que me orientaras sobre como adquirirlas o que hacer para mejorar gracias

[dannysmother]

@PERMARY100 En donde vive usted? Mi hijo ha mejorado su balance y fortalecimiento en las piernas con fisioterapia. Tiene un terapista excelente. Lo puede ver en los videos Peripheral Neuropathy 2 y 3. Tambien ha adelgazado y se siente mejor. Los nervios sigen danados, pero el se ha vuelto un nino muy fuerte y responsable por su salud. Ya va a cumplir 14 anos.  Al comienzo fue muy dificil pero ya ha aceptado su condicion.

[tickyul]

I got diagnosed with Cmt1a at age 40. It all became clear, why even the fat kid would beat me in sprints, why I lost 25 lbs of muscle in bootcamp (even though I was eating 5-8 thousand calories a day), why, when I have been lifing weight since I was a kid, I never got strong. Cmt is supposed to be the most common form of PN, but most doctors I have talked to have never heard of it (except neurologists). Demylation of the PNS has a lot of implications beyond just effecting the arms and legs.

[dannysmother]

@tickyul It looks like Danny has a rare case of CMT. He is part of two research studies, one in UM and another one in Univ of San Paulo. Hoping to find the mutation. Overall, he is feeling better despite of his condition. He has lost weight and keeps doing his physical therapy. He is almost 14 years old, has accepted his condition and is moving on. At the beginning it was extremely hard on him. But his physical therapist has done a fantastic job and has helped improved his balance a lot.

[tickyul]

@dannysmother: I am glad to here that he is doing good. Has he had genetic testing, that is valuable in a lot of cases, sometimes it will not give good information, very expensive. I will say that keeping an ideal weight is very important, makes the condition much more bearable. A person with cmt carrying an extra 10 lbs, has much more trouble with the extra weight, than a normal person. Good luck!

[findmeintime]

@dannysmother - Have his B12 levels been checked?

[tracy10UT]

Oh my gosh! Are there no special shoes this person can wear? I don't mean orthotics -- I mean special shoes entirely.  Looks extremely painful!

[dannysmother]

@tracy10UT Yes. there are. But he still need his orthotics to prevent the foot drop.

[mikerobinsonn]

thats horrible, what a tough kid.

i've got something going wrong with me right now, im 19, and it had begun with tendonitis in one arm in march, then both in august, then cubital tunnel syndrome in both arms in october, then, i got tingling in my feet after a walk last tuesday that is still to leave..

[CavalierRidrDave]

I have cmt also, i am 23, a bit milder than what was shown here.. It's sad there is no cure for this, also sad that is genetic, so u have to have it.. Now a days they make a lot of different braces and supports that help all of the feet dragging

[cindysellshomes]

It looks like he had Triple Arthridosis. I had that operation at age 10 with incisions in the same place. I'm 43 years old nw. I have Charcot Marie tooth

[janice513233]

I have severe nerve damage from surgery to both my feet is anyone trying a natural supplement??? janice

[tickyul]

@janice513233 I have Cmt1a, severe nerve damage everywhere. Have you tried high dosage Vitamin C, seems to really help me when I have that bad burning pain that just keeps going on and on.

[jstngardipee]

I am so sorry this must be painful??

[niceghostlyman]

hola soy carlos danny eres muy valiente para superar esto te admiro por tu valentia danny i su madre usted tambien quedese fuerte que dios lo va ayudar al daniel as sido una muy buena madre=) sigua asi!!!!

[GothicBloodyFantasy]

wow thats how I walk when both my feet are asleep =( my boyfriend has a severe case of CMT and may be in a wheelchair.

[BenCiro]

Hola, vivo en Israel donde ciertamente tenemos una medicina de investigacion muy adelantada, si crees que hay algo para averiguar o intentar aqui, hazmelo saber y tratare ayudarte en lo que pueda.

Mucha suerte.

[dannysmother]

Muchas gracias por tu comentario. Te estoy enviando un email directamente en BenCiro...

[okieudokie]

Continued:=: At age 43 I had a knee replaced due to severe pain. I hyper extend at the knees in order to walk. Unfortunately the knee replacement went bad for me & I now have to use a walker to get around safely. My hubby takes me out in a wheelchair, my hands are to weak for me to wheel the chair myself. My home does not allow me to use a wheelchair inside because of size so now I'm confined to one bedroom in our home. I was active, but now I wait to die. I am trapped! I hope better 4 other's.

[crippled82]

sorry about the knees :(

you should try to swim. never give up.

myostatin inhibitors could provide an answer in the near future.

[dannysmother]

Physical therapy is helping Danny's balance now. But his lower legs don't seem to keep growing in proportion to the rest of his body.

[aidanne07]

Thats so sad that in these days thing's like this can happen. I hope you get the help you yourself need. Good luck.

[okieudokie]

Hi everyone, I also have CMT type 2A since age 5. I'm now 47. 1st surgery & AFO's at age 9 to have heel chords lengthened and triple arthodesis at age 12 on both feet. I had one ankle fused solid at age 25, I could not balance myself when I stood. After the fushion I could stand unaided. I have also dealt with chronic pain since age 9, even with RX's I cry myself to sleep too often. At age 30 it progressed into my hands and I had to start using Canadian ForeArm Crutches to walk. Continued

[Nevarent]

I hope they are able to find breakthroughs in this field. Good luck to you and your son.

[dannysmother]

We are praying for that. He is part of a study on CMT at the University of Miami. Thank you :-)

[Nevarent]

So they have confirmed that it IS CMT? If you don't mind I'd like to know if you get progress on this or how you got the University to look into him.

My wife might have this too, you see. Thanks.

[tandjhand]

I also have 2 children with CMT and a brother and Grandchildren. We all do the best we can. I think the very hardest thing we've had to deal with is others not understanding this disorder.

I wish a full and happy life for your son.

You are right we should focus on what we can do and what we do have and make the best life we can and thank God we aren't worse as many others are.

[tandjhand]

I am 51 with CMT. Some people do not understand the severity of how this disease affects the everyday life of those affected by it.

I was recently told, I should get over it because of being concerned with going to strange places. Steps without railings or obstacles that can cause me to trip are dangerous to me. I fall frequently and because I had a hip replacement, and muscle weakness, I am at high risk for hid dislocation. I wish I could just get over it.

[dannysmother]

Yes, in fact my son lives in his own world and gets frustrated a lot of times for not been able to control his balance on an uneven street. I keep telling him to look at his other blessings like his eyes, his heart, his brain, etc. I know how people are not familiar with this condition and sometimes they can be cruel. Stay strong. Walk very carefully. You are not alone.

[cindysellshomes]

Definitely Charcot Marie Tooth. Contact your local Muscular Dystrophy clinic

[fierceencounter6]

Diffently looks like CMT, my feet were the same way at that age. I had foot reconstructive surgery at 13, which greatly realinged my feet and i walked straighter, however the weakness is still here in my feet and i am 18 now. I hope that the cause of cmt is found out, to get rid of the disesae. And hopefully someday soon people will find a way to create nerve cells.

[dannysmother]

Thank you for your comment. I hope cure is found soon. Good luck and God bless.

[fatmanmally]

i am a cmt sufferer, it amazes me how bad it can affect some.

i'm only 15 and i'm starting to lose the feeling in my feet.

i am still able to live a normal life, but it shocked me to see people in wheelchairs from it.

i think the main concern any cmt sufferer should have at the moment though, is to raise awareness.

we are unable to afford the benefits we need sheerly because no one knows about the condition.

cmt is affecting more and more as we speak and is a problem that needs to be treated.

[justbored78]

i know its not the same, but i am a teenager with cerebral palsy, and i noticed that i hold my feet sideways in a similar way. hope everything is going well for him!

[dannysmother]

Thank you for your comment. We have a friend who lives in Miami with similar feet that also has cerebral palsy. In Danny's case, doctors have ruled that out. Actually, in most cases cerebral palsy is not a progressive condition. I hope all is going well for you too!

[juggler90]

Espero que estés bien. Tengo CMT y entiendo estos problemas. Me encanta mucho tus pantalones. Muy muy bien amigo.

[dannysmother]

hola. soy la mama de Danny. vives en EEUU? que tipo de cmt tienes? a el no le han confirmado.

[juggler90]

Hola. No vivo en el DF en Mexico pero soy de Inglaterra. Tengo CMT tipo 1. Pienso que el método para decir su tipo de CMT es genetics.

[screwlstew]

ankle foot orthodics, buddy!

[dannysmother]

Yes. He has those. Thank you

[justin111379]

Was his achilles (however spelled) tendon tight. I had to have mine released. My foot used to curve in. I have CMT and was diagnosed at 4. CMT type 2. I am 28. If you have any questions I will be glad to help out. I know what it's like. Why 9 procedures? I have always had foot drop and just lift my knees high. Write me back please. I am concerned.

[dannysmother]

Hi Justin, sorry for taking so long. He just had his heal cords and hamstrings lenghten. The other surgeries were to align his feet. Have you heard of the CMT group in yahoo?

[tickyul]

@justin111379 I have cmt1a, wore braces as a kid. I have really tight achilles tendons, I think the stress front the inbalance is what screwed my knees up. I was diagnosed at 40.....but, could always sense that something was wrong.

[dannysmother]

Hi. The cuts came from 9 orthopedic procedures. His foot drop was much worse before. He used to drag his feet.

[abasios]

Are the cuts on the feet operations to ease the condition?