Weird neuropathy
 

I've been diagnosed with sensimotor poly neuropathy, ncv showed it emg was zero or clean. Neuro dr blamed it on diabetes, a1c has never been over 6.4, and b6 toxicity, over twice the high normal, I don't take supplements. Getting all kinds of cold feeling down my thighs, bit toe and second toe and little toe numb, feel like there is cement in my balls of my feet. Just recently my gp order MRI of my lower spine to show bilateral l4-l5 and l5-s1 compression on nerves. Also my spinal column is much smaller than the average person genetic defect. Also been having twitches in my leg, don't know whether that is from anxiety or nerve thing. Also when i rub my thighs and put my pants on my feet vibrated, looked it up its called pallesthesia. Made the mistake of using dr google about twitching and als popped up now I'm scared like hell.

Been dealing with similar issues when certain materials; other than soft, with my legs and ankles. I wouldn't call mine vibrating; but the tingling and some burning does occur with feet/ankles. Sometimes responses when using Google can be misleading and cover many conditions. Hope you will be okay and put "scared" aside for now.

Gerry

hi gerry
very hard to put that aside, i try not to look for anything anymore accept the forums to see if people have similar issues. thank you for your reply and care

I have a lot of similar symptoms:

- Altered sensation in the three smallest toes on my right foot. They're not numb, but feel weird as if my socks are bunched up between my toes. When it first started, I kept checking my sock.

- When I'm flaring, that sensation extends to my ankles on both feet. I describe it as feeling like they're wrapped in cellophane.

- I also have "referred sensation" in both my feet, but mine starts higher around the armpit area. If I rub the right side of my torso, I get a stronger vibration in my right foot. Same with the left side. I have constant vibration in my feet, but it just gets stronger with the touch.

- Yes, lots of twitching sensation, but I think magnesium supplements help. My twitches are not visible to the eye.

Just to let you know, you are the first person on this forum that I know of who shares this bizarre referred sensation thing with me.

Wow, mine start at my waist , even in the shower soaping myself up, left side is worst Than the right side, you made me feel better, since everyone i tell about this sensation looks at me like I'm crazy, my neurologist says its irritated nerves that are vibrating. I always think the worst , long history of that. My glucose has been up the last few days since i got some procedure done and had to stop metformin during it , starting up tomorrow.

I have tried r ala for two weeks didn't seem to help so i stopped
Have magnesium cream
Take fish oil

I'm going back to a neuro for the first time since 2014, so I'll find out how crazy this one thinks I am. My other one is semi-retired, and it would take 8 months to get an appt with him, so I figured I'd try someone else. Maybe they'll have more ideas.

So the only thing they've found metabolically with you is elevated B6 and elevated A1C? From my research, I know that even people who are pre-diabetic can get neuropathy from it, but my understanding is that it's not full body. It classically starts in the feet and moves up to the legs. Mine is full body. I even have weirdness in my scalp and face.

yeah i get a little tinkling in my fingers but rarely, my feet when are numb in the areas i said, bending my toes feels strange and the twitches drive me crazy and of course touching anything from my waist down gives me vibration in the feet which you can find very little on the web about, we can't be the only two with this. i have everything for the neuro dr including a list of how things happen so she can read it and i won't forget anything.

good luck with your new neuro guy i will be anxious to hear what they say, it seems it usually 4 months to get into to seeing neurologist. can't understand why.

I don't have quite the same referred sensation with vibrating, but something that is maybe similar. When scratch my head or neck, the thigh on the opposite side gets shivers. Also when I sneeze, I get shivers in both thighs. I mentioned it to my neuro and she was perplexed too!

I guess we all have these strange things with our bodies. I keep on thinking some nerves are just irritated , cant wait to see my second neurologist so they can look at me strange too.

Also found out that bilaterallly l4 l5 and l5 s1 are sitting on my nerves with moderate stenosis. My second opinion is next wed with another neurologist I'm sure she will look at me like I'm crazy.