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Cold feet due to neuropathy - need help

Neuropathy | Last Active: Jun 3 8:22pm | Replies (229)

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@smiddy73

I have an ice cold left foot, which I've had for about 5 years. I'm 75. If I go for a decent walk it changes to burning. In bed at night it all goes away and I am like toast in the morning but comes back when I get up.
I was tested for all the usual suspects to no avail ( standard blood tests).I did have a debate about the accuracy of these tests eg for underactive thyroid or B12 deficiency but to no avail. I am very thin and lacking in muscle( I haven't always been like that). I feel cold all the time all over not just feet although my left foot is much worse. There is a debate about testing thyroid function and whether the standard is sufficient,etc but I'll leave that out here. Any comments would be helpful though.
I consulted a neurologist who was thorough, did MRI scans of brain and spine, nerve conduction study too. All ok except my spine had degenerative issues( normal for my age). He asked if i had leg pain . I didn't then so that seems to have led him to conclude I had small fibre neuropathy. He was unsure ( his speciality is dementia it turned out). He introduced me to a colleague who purportedly knew more. He rolled a spherical ball over my foot then told me I had a " neuropathy". That was it. My understanding is that, currently a skin biopsy is required to confirm small fibre neuropathy. He confirmed in writing that I had age related peripheral neuropathy. He never once mentioned small fibre neuropathy. I gave up at this point.
I had a lump on top of my left foot. I can't remember if it was apparent when I saw the neurologists; probably was..My GP referred me for an ultrasound scan. It was totally inconclusive so I got an MRI scan done. Again inconclusive but " could be a swelling on a tendon". The podiatrist suggested leaving for 4 months then getting another MRI scan. This I duly did then met the podiatrist with a colleague.
By then I had been told by a pedorthist I had fallen arches; " collapsed arch" in my left foot. To me, flat feet( adult acquired). I was by this time getting leg pain too. A friend told me he had had the same, quite debilitating, but that getting customised shoe insoles cured the pains for him. I did the same. They have helped to remove the leg pain too. I told the podiatrist all this but she was unconvinced. she kept insisting I had small fibre neuropathy ( I had told her that was the neurology diagnosis). My reading of all this is that a swelling on a tendon, acquired flat feet etc can lead to compression of the tibial nerve in the foot ( tarsal tunnel syndrome or such like).
This is a neuropathy albeit an unusual one. Could I have this. She was adamant I did not have this though so I gave up. But it still lingers....Meanwhile the parasthesia in my left foot persists. I get a little too in the right foot but not nearly so bad.
I've gone on enough. I may have missed bits but think I've set out the main points.
At times the sensations are almost unbearable and getting worse.
Does anyone have anything similar?

PS I did also get checked thoroughly for lumber stenosis by a specialist physiotherapist and was told I didn't have spinal stenosis, another potential reason for my ails.

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Replies to "I have an ice cold left foot, which I've had for about 5 years. I'm 75...."

I had bad spinal stenosis and had the required surgery. It did not help. My neuropathy is diagnosed as idiopathic meaning there is no cause. I do not believe this. I believe in cause and effect so therefore something has to be causing it but thus far I’ve gotten no answers. I’ve also had decompression surgery on my neurotic leg and that didn’t help either. 😩