Another question for you, Icehouse (and anyone else who has been going through the recovery process) - did you have good days and bad days? Yesterday my feet were feeling pretty good - when I was walking, I swore I kind of felt some feeling in the middle-bottoms of my feet, so I could actually walk "heel-toe, heel-toe" instead of my usual "foot on the ground all at once" clump clump walk (like my feet are two big bricks). Sounds odd, I know, but that's how it feels... Is that the "gait" you refer to, Icehouse? Or is it more of a "limp"?

ANYWAY...

So, today my feet are worse than ever. Left foot is completely numb, not even any tingling. My knees are incredibly weak and wobbly as well. I barely got through half an hour at the grocery store - I was afraid I was going to fall over! I am hoping beyond hope that this is just a bad day and tomorrow I'll be back to a "good" day and get some of that slight feeling back that I had yesterday. I'll report back tomorrow but hopefully in the meantime I will hear from some of you about the good day/bad day thing.

At the start of this whole ordeal (circa 2007) I noticed that stepping up onto curbs got more difficult and I would find places with ramps on purpose. My feet felt heavy and I would lose my balance occasionally. When the numbness started to set in I would purposely park near the "cart things" so I could use a cart to steady myself while I shopped (read booze). The tingling got worse, the numbness got worse to the point where I could not walk without assistance.

I continued to drink, telling myself that it was just a phase. Hello wheelchair!

When I quit drinking altogether in 2011 that is when the numbness plateaued and it SLOWLY got better. I graduated to a walker, then to a cane and then back to walking where the 'gait' came into play. The damage to the nerves caused my balance to appear like I was drunk

So, yes, I had good days and bad days.

I am hoping I caught it early enough so I can eventually heal. I have never been a patient person, though , which is why I am asking these questions like "what should I be feeling?" even though I have only been on the Benfotiamine etc. since mid-July. I appreciate your replies more than you know, Icehouse - thanks so much. When I have time, I am going to go back and read this whole thread again. It's inspiring and encouraging!

Hi there,
Through reading a lot of threads/posts I find numbness is often transient. It can come and go and it generally seems to resolve itself. I have been 50% numb at times and sensation always came back. One thing I learned to distinguish was actual numbness from a feeling of numbness. So in essence the numbness was superficial. I still had feeling in my arms/legs but the skin felt numb. This is a very good sign that sensation will come back.
Aussie

Thanks, Aussie - that is encouraging. I felt a little better yesterday and again this morning - but not as good as that one day where I felt like I could almost walk like a normal person. My other concern is the growing numbness/tingling in my fingertips that just started happening about 6 weeks ago. That was AFTER I started taking the Benfotiamine, so it really freaked me out (I was like, Isn't this stuff working at all!?).

The one other symptom I am now having is a bit of stiffness in my joints - fingers and knees. I think that was why I felt "wobbly" in the grocery store the other day. I am sure that could be attributed to my age, too (44). I am not an active person by nature, especially now that I've got this darn neuropathy thing! I am going to try to get more walking in, just to help with general muscle strength. I am always afraid I'm going to trip on something though. Excuses, excuses...

Wobbly, insecure walking, joints feel stiff. YES! This is exactly what I was feeling at the start of it. And for me it got WORSE as I continued to drink. The vitamin regime that I got on was a slow process forward (not 60 days) but it really helped me. I still take a multivitamin daily and I try to eat well. This means very little sugar, lots of water or drinks with electrolytes, vitamins, etc. I eat quite a bit of meat and salads.

Thought I'd check in, since it's been, a long time. 410 days sober (or there abouts). Neuropathy...hard to tell, the tingling/pins and needles are gone, there's still quite a bit of numbness in my feet. Doesn't really bother me much, just annoying. Hands are fine (I was starting to get it there too).

Bad side: Ended up with Charcot's foot in my left foot (yeah! me!). I was actually told it was a torn tendon, walked around on it for a year even though it hurt badly and when I finally got an MRI the doc said it looked like a bomb went off. Wee! Doc also made note of the fact that wounds on my feet heal slow. I guess neuropathy messes with the circulation in your affected limbs, this is why diabetic (did I mention I'm diabetic too! Alcohol sure did my body good, also my neuropathy may not be entirely alcohol related) foot wounds heal so slowly. Any rate, I guess I need to get the bones in my feet fused together to prevent what's left of my arch from collapsing on that side.

Good side: I'm happier and more self-confident than I've been in, well ever. Proud as I can be on what I've accomplished in a year. And slowly but surely getting healthy again.

1156 days sober.

This is just a formality really

I have been trying to get in better shape, and have enjoyed riding bicycles with my daughter. We sometimes go on 10 mile trips or so. It feels great while I am doing it, but my PN symptoms seems a bit worse overall. I have tried to find out more but the research appears to be thin, to say the least. I realize common sense about any exercise for any purpose is a a good idea, but I find conflicting advice about its role in PN..Any thoughts on this?

Thank you!

Maybe it is the foot actions on the bike?.... I had terrible problems with bikes and certain resistance machines at the gym.
The flexing of the foot bothered me tremendously.