Has anyone got Charcot Marie Tooth disease?

[Nat6999]

Two years ago I lost the feeling in my legs & feet over the space of a month. I eventually after many visits to my GP & lots of arguing got a private referral to a neurologist who immediately transferred me to his NHS clinic & I had MRI scans & nerve conduction studies. After my brain MRI & blood tests I was told my B12 was very low, less than 150, I was prescribed the injections, my nerve conduction studies showed severe sensorimotor axonal neuropathy, I haven't had an appointment with my neurologist since but all he has ever considered was B12 deficiency. I am still numb, struggling to walk & extremely fed up. Ds has always had problems walking, he suffers a really bad cramps in his calves that have led to him needing crutches at times when they have injured his muscles, then overnight on Monday he has lost the feeling below his knees, he saw the GP yesterday who has requested lots of blood tests & done a referral to neurology. I am beginning to think that there is some connection between mine & his conditions, I know they say stay away from Google but all I am coming up with is Cgarcot Marie Tooth disease. Has anyone got this?

*Charcot Marie Tooth Disease

Hey @Nat6999

I wanted to respond since you haven't had any other replies.

I hope your DS is okay, did the blood tests see anything?

I don't have this but my Grandmother did and I had similar levels of B12 so I'm now having regular injections.

I don't recall her ever being in pain, she had the typical high arches of Charcot and she couldn't flex her ankle so her foot would catch on the ground as she walked.

She wasn't diagnosed until her 60s and was falling for a while before that. She never lost the feeling in her legs though so I'd hope this is just a bad Google rabbit hole you fell out nto.

I hope this helps you and best of luck, I'd be interested for my own sake to know how you get on, my GP has washed her hands of me now I'm on 3 monthly injections... apparently I cannot have and symptoms now since my B12 must be in the 100s

DNiece has CMT, diagnosed aged 2, inherited from her fathers side. It’s a genetic disorder not an autoimmune disease.

MotherTruckerr His bloods showed low Vit D & his B12 was 184, our GP has refused to give him the injections & suggested he take oral supplements for 3 months. I have started him on B12 patches & tablets, high dose Vit D, Vit B Complex & Magnesium. He is seeing a neurologist on 12 October so hope fully we should know more then, if he needs the B12 injections, I can do them as I do my own.

My sister was diagnosed with this 10yrs ago. There is a society that meets every year to discuss this. Her son has suffered badly with his feet, her daughter has it, but only passed it
in two sons, not daughter. It goes down the male line, but like autuism, I believe. I dont suffer as much as her. She has badly swollen feet, numbness, etc.... look up the Soiciety. More people than you think. Why I dont have it like her, who knows, but I dont. Bur then I have hair loss, so auto immune may work different ways....Our father had very bad feet. Flat arches etc. .....

I know Mum, son & daughter who were neighbors that have it. Mum is now in her 70’s and mobility is becoming much more limited. Apparently high doses of tumeric can be very helpful.