How to best explain?

I wish you luck going forward. I am now 85 and the numbness and balance have got much worse since I turned 80. I can shuffle around the house without a cane but need a cane or rollator walking outside.

Ray - As it is often said, each person has to figure out what works best for her or his particular situation. I'm glad you were able to find orthotics that help you. I am finding one thing a little odd lately. I have the feeling that the neuropathy tends to level off for a while, then a change takes place...normally not better. My last change which involved worse balance in conjunction with increased neuropathy took place around early November. The increase was in neuropathy where it already exists, below knee but not moving upward towards knee. Been same for about 4 months.

Hi, Ed. My PN varies, too, but not months between episodes but within the same day. Ordinarily, I'll feel fine ("fine" meaning I still zig-zag, but it's manageable) all morning and through most of the afternoon, but then starting around 4 or 5 pm, I'll get super woozy; it will fade, however, around 7 or 8 pm. I've explained this to my doctors, but they're as puzzled as I am. ––Ray

Ray,
I started noticing leg sensations and perceived weakness back in 2017…neurologist did blood work, brain, neck and lumbar scans as well as NCS/EMG. Eventually neuropathy showed up…although she never said what type. My own research tells me it must be large fiber type as the NCS/EMG showed it.
A few years later I tested positive for some autonomic neuropathy. While the neurologist said she doesn’t know cause, I am pre-diabetic…some studies show that could be a cause. The neurologist provides little suggestions. As I mentioned previously, it has continued to gradually progress with more numbness, weakness and fatigue. Im still able to walk daily ( a couple miles max) but it’s getting tougher and balance has worsened lately. I’ve had undiagnosed motion/ balance issues since late 20’s which magnifies the issue.
Thinking back I think there were signs prior to 2017…likely small fiber…the neurologist told me once if you have small fiber ( or large)…you have or will have the other. Ray, were you tested for autonomic neuropathy?
Steve

Hi guys hope you don’t mind me joining in on this very unique condition. Back in 2015 when I was 48 I began suffering with very strange left leg & foot sensitivity. When driving my foot would spontaneously turn inwards and slip off the clutch thus me stalling the car. It wasn’t painful but more of a sharp stab in the bottom of my foot. Then my calf went into a spasm, and my thigh would constantly ache. My GP just put it down to nerve pain coming from my neck. Then my foot was completely frozen, and I had no pulse in the whole leg, apparently I needed a Ct scan which found it straight away , blocked arteries and I had to have an angioplasty, which was uncomfortable. 6 days later my leg was completely frozen and dying by the minute, so I was rushed back into hospital. The angioplasty had crushed my arteries and caused an occlusion, so I was prepped for surgery and had to look forward to being cut from groin downwards, lower leg would need to be opened for a artery graft and because it involved my iliac artery they were more than likely going through my abdomen. 4 hours it took, I was back on the ward bout 15 minutes and my femoral artery burst open and within seconds I was swamped in my blood. I could feel myself fading away, it was the scariest thing ever. That blood loss left me with a multitude of illnesses, fibromyalgia, postural hypotension, small stroke, Horners syndrome, peripheral vascular disease, stage 3a. Kidney disease, low blood pressure. It’s been a long journey of acceptance, it’s a lonely road to travel and I so miss my very physical job, which I can’t do anymore. Hope I have not bored you all to death at this point 😳🤣

Hi guys hope you don’t mind me joining in on this very unique condition. Back in 2015 when I was 48 I began suffering with very strange left leg & foot sensitivity. When driving my foot would spontaneously turn inwards and slip off the clutch thus me stalling the car. It wasn’t painful but more of a sharp stab in the bottom of my foot. Then my calf went into a spasm, and my thigh would constantly ache. My GP just put it down to nerve pain coming from my neck. Then my foot was completely frozen, and I had no pulse in the whole leg, apparently I needed a Ct scan which found it straight away , blocked arteries and I had to have an angioplasty, which was uncomfortable. 6 days later my leg was completely frozen and dying by the minute, so I was rushed back into hospital. The angioplasty had crushed my arteries and caused an occlusion, so I was prepped for surgery and had to look forward to being cut from groin downwards, lower leg would need to be opened for a artery graft and because it involved my iliac artery they were more than likely going through my abdomen. 4 hours it took, I was back on the ward bout 15 minutes and my femoral artery burst open and within seconds I was swamped in my blood. I could feel myself fading away, it was the scariest thing ever. That blood loss left me with a multitude of illnesses, fibromyalgia, postural hypotension, small stroke, Horners syndrome, peripheral vascular disease, stage 3a. Kidney disease, low blood pressure. It’s been a long journey of acceptance, it’s a lonely road to travel and I so miss my very physical job, which I can’t do anymore. Hope I have not bored you all to death at this point 😳🤣