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Cheers for sharing your story mate, it's so relatable. I have HNPP along with at least 2 of my 4 children. I have trained on and off since 14 (I'm 52 now). I make gains and then become injured, also the bars affected my hand nerve pain and I kept dropping things. I've recently switched to bands and started a fitness channel to document mine, and my wife's workouts @MarkandJu

How are you right now?

I have HNPP too brother. It’s unpredictable and it sucks.

I am male and 26 years old Korean living in South Korea , and I am diagnosed HNPP by doctor just like you. Man People here are obliged to go military in their 20s , and I started to know I had this weird condition in my high school years playing basketball competitively, one day I slipped my ankle while playing and next day I couldn’t move my injured side of foot. I thought everyone could be this injured by slipping their ankles hard, but doctors said No, It is not supposed to be like me if I don’t have any conditions. I was diagnosed wrongly so many times by various of doctors of various fields(surgeons, neurologists) finally before the Chromosomes Test certificates that My body doesn‘t have certain part of blueprint that should be used When Wire coverings for neurons protection are built. Some Fucking Stupid Surgeon said I need big surgery that change my neuron pathways immediately in next month and I almost trusted what he said but It has turned out completely wrong and I didn’t need any surgery since It doesn’t help anything with my condition. I am extremely depressed as fuck every moment that I feel so weak, which is so ironical thinking that how much normal, actually more than average I am look like. I am pretty big man compared to normal Korean 183 cm heights and 91kg, pretty bigger than most of People out there in South Korea and all the people just seemingly judge me as a tough guy, And I also hope myself to be like that guy but reality is I have this fucking condition that most of people misunderstood me like I am joking or lying when my limbs are paralyzed by daily pressure. This point is where I get mad at myself so badly it irritates me and got me thinking like I can’t win a single page or round of my life, and no one understands me, even my parents which they have already divorced at my first age and they are just ignorant about their generic condition exists too. Recently I started a part time work that I have to be stood most working time and It is 3days passed morning and I am already feeling extreme discomfort of my limbs, they are starting to get paralyzed. Everyone in the work likes me and I like them, I try to work hard and smile, act and say positively and I really am sad that I have to say them "I am weak not seemingly I look tough guy I have condition that I didn’t tell ya and I need this work stopped, Sorry for the changing mind doing the work, I can’t keep this going" and I am so sad that I am fucking weak like this, I just curse myself and me human being ..

Hey man, I have HNPP. I wanted to know if you managed to run or go to the gym to exercise? Tell me what exercises were you able to perform? I would like to know if you get working as well

Got diagnosed with HNPP at 17. Loss of function and feeling in my left arm lead to a neurologist ordering genetic tests and revealing the missing component of the PMP22 gene. Nice knowing that others have gone through the same physical and mental problems that have plagued me. Keep your heads up

Hi. Me too 😔.

I have never been diagnosed with this condition, but I found it because it's what I discovered after desperately trying to find a cause for symptoms. Physical activities have been causing me neuropathy for years now. I'm 24. I'm afraid to lift weights anymore because i get shooting electric shocks through my leg and back. I lost total sensation in part of my big toe. Both of my ulnar nerves give me trouble whenever I bend my elbows or have pressure on them. I developed carpal tunnel after starting to use a tape gun at work. I had 2 EMGs done because I developed widespread muscle twitching and pain in my extremities when I was 19. They told me my ulnar nerve was irritated and that was that. Sorry for the long post, but I just have to vent because I feel like I'm deteriorating and I don't know why.

I’ve got this condition.

Thanks for your video, I appreciate the fact that there’s someone who took time to describe widely and in deep thoughts about HNPP. I completely understand you!

I have had both arms operated on as well -wrists & elbows. It’s helped A LOT. I have other complications though from my hnpp which cause me chronic pain which keeps getting more severe. I had no symptoms before my car accident and now it’s 4yrs later and I went from healthy to completely miserable. At first it was just wrist & hand pain along with lower back & neck, then it progressed to my forearms, and eventually now it’s extremely severe in my neck and it’s turned into TMJ Syndrome that’s so severe I involuntarily vomit from the pain. Not to mention my legs are always going numb... so that’s fun. The fatigue is debilitating. I participated in Dr. Li’s Fatigue study 2yrs ago -so you can look that up easily on NCBI. Hopefully this year I’ll get to participate in his study this year IF it happens (in Detroit). Hnpp is just like a horrible “curse” (for the lack of a better term).

Hi, the HNPP make you pain ? Mine superrrrr pain make me walk like a cripple, today my feet is pain all day and all the time I couldn’t go out

Hello! Translate my text tô english right? Pesquise no UA-cam sobre protocolo Coimbra, que é um médico Brasileiro, neurologista, que fala à respeito da vitamina D em altas doses. Eu também tenho essa condição genérico, HNPP, logo após eu tomo vitamina D me expondo ao sol, e meu corpo tem respondido muito bem !!! Inclusive faço natação!!!! Dá uma olha nisso!!! Deus o abençoe!!!

I have HNPP, my arm was paralyzed for 6 months when I was 12, It's scary not knowing when something may just randomly paralyze, It makes me worry for when I get older and to see what it will be like then, The disorder is progressive and will only get worse. I hope to live a good life and hopefully not pass my genetic disorder to my children. Thank you for making this video and just know you aren't alone. I work with people with disabilities now and I deal with Assistive technology for those who struggle the same way I do.

Hey boss, thanks for the content. I too have HNPP.. same story as you where I saw multiple doctors and finally took a specific blood test to find out. By then my bicep came back to life (thank god). Knowing what I know now.. I treat my workouts very methodically and utilize the mind muscle connection to it's fullest. I started Keto and IF and I feel this has helped TREMENDOUSLY in terms of lowering inflammation and assisting in the regrowth of nerves. Follow me on instagram @ketochris for further inspiration from your HNPP brother!!

I also have HNPP it’s horrible the pain is terrible I have so much pain

I went to Basic Training on Aug 28th 2018 and 1st day of Basic Training my hands started getting numb I was scared but I tried to fight through it for a week but then it got so bad that i had to have my battle buddies tie my boots and make my bed, on the 7th we went out to do climbing drills and I told my drill sgt that i couldnt do it he though i was joking about my hands I sat in med quarters 6 days before going to the neurolgist at fort gorden, my drill sgt drove me down their with two of my battle buddies from fort jackson we got their and I was conserned I got called back to the office the nurse was a first liutenent I told her what happend and then the doctor came in he was a captain btw the branch is Army, well i got some nerve sapping thingy where it like checked my feet to my brain or something by electricuting me with a small palse and the doctor diagnosed me with HNPP I was devistated because Im 18 and I wanted to be in the army... long story short I got out of med quarters 4 days later after being told by the nurse at fort jackson how everything would work with my discharge they gave me a EPTS (existing prior to service) and i went back to my battalion after getting their my drill sgt asked me what happend he really knew i wanted to be their and I told him what happend and he felt extremly bad for me at first it was a joke with the drill sgts and my fellow battle buddies because the drills sgts called me "NO HANDS" I thought it was pretty funny also until i had to go to med quarters and find out i was getting discharged. so basically after i got back to my battalion I got me a lawyer cause I wanted to stay and the doctor wouldn't give me a second opinion from another nerologist. but my lawyer couldn't do much so 20 days past by and this whole time I had to sit and watch all my battle buddies shoot and do combatives and do all this cool shit and all i was allowed to do was sit and watch I thought well maybe ill be out of here soon but I didnt realize how the military works it takes very long to discharge someone because of all the paper work so over a month and a half past its october and i finally got sent to 120th which was the place we would go to the airport from i was excited but i wanted to leave before my birthday it was the 24th when i got put their and i was worried i was going to be stuck their for ever and btw sitting and thinking for almost 2 months straight really messes you up mentally it takes away all of your courage and confidence and makes you feel like shit having to watch everyone of your friends do cool things while you sit their and never know when your leaving, so the 25th comes by and i find out im leaving the next day on the 26th which is two days before my birthday (October 28th) so long story short i get home two days before my birthday no confidence left no courage nothing. and now im depressed as shit dont know what to do with my life and its wurse because my whole life was dependent on the military and i got discharged the first week...... I will never forget the day that doctor told me i was being discharged from the only thing i ever wanted in my life. and now im lost and dont know what to do... I just try to keep my head up and hope for the best

Its such a frustrating disease! Glad you pulled out of you depression.

You do a great job at these videos.....you're a natural.

Great bible verse. Love it.

Love you man!!! "Fear knocked on the door, faith answered, no one was there" Thats one of my favorite quotes! Great seeing you in SC.... Sending you good vibes!

this was amazing man