Sorry to post again but I'm talking to my GP on Monday (my surgery is finally starting to open up a bit to regular appointments) and wondered if I should mention my feet.
Basically they are permanently feeling cold. But sometimes they feel cold, but are not actually cold. Maybe a slight tingling? It's hard to describe. I'm also unable to accurately discern temperature of bath water etc. on my feet so have to be careful. Occasionally very obvious tingly toes or stabbing pain, but this is infrequent and brief. I self inject once every 6 days. I know this is neuropathy but it has never been officially diagnosed.
I recently reapplied for PIP (for a different condition) and I put down about my feet and the temperature thing, I thought wth because I need all the help I can get so if it gets me an extra 2 points I'll be happy.
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Curlygal
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I have a problem with my feet too . Sometimes I describe it as “ burning feet “ , and sometimes as “frozen feet” . But the feet feel normal to the touch . The feet also feel that I’m wearing shoes at least a size too small. Yes really uncomfortable . I realise that this neuropathy caused by untreated Pernicious Anaemia . I did eventually get a formal ( positive Intrinsic Factor Antibody test ) diagnosis of P.A. This look a long time and I had to resort to a private doctor to get this . After 8 years of self-injecting , I realise that this is now irreversible. But I suggest that you keep on self injecting , because I have read on the forum that some patients have success after many years of injecting . Best wishes .
Thanks, I plan to carry on self injecting; I'm scared of what would happen if I stopped! I've only been tested for intrinsic factor antibodies once and it was negative. Parietal cell antibodies (is this correct?) were also negative.
But you do know that a negative Intrinsic Factor Antibody test does NOT mean that you don’t have P.A. About 50% of PA. patients test negative . The parietal cell antibodies test is really not considered a suitable test for P.A. .great that you continue to self inject . . Don’t forget a 400 mcg daily folic acid tablet . 👍
Yes, I do know that, but someone on here told me (years ago) that the combination of the 2 tests both being negative made PA less likely. I'm not really sure what I believe, doesn't help that all the doctors etc I've spoken to about it seem to think I'm some kind of nutter! My immunology team recently expressed "concern" about my astronomically high B12 level..... it's disheartening.
But an astronomically high B12 is totally harmless . Have you read the Dutch scientific paper about that .? I can’t remember the reference for it , but if you can find it , it will put your mind at rest .. YOU CANNOT OVERDOSE ON B12 . one of the few vitamins that one can say that about . Stichting B12 tekort or something similar . Yes so many of us have been through the humiliation of being thought of as “ nutters” ! It’s horrible . The medical profession is horribly ignorant about PA/ B12 deficiency . Why else would Martyn Hooper have founded the PAS?
Keep on injecting There ia 100% no harm in it even if you inject twice a day .
If you had high B12 reading , without injections , that is a different matter . Best wishes ,
Same here in 2014 I complained of tirednes no energy wanted me to take antidepressants I didn't.. a year later I complained again as the tiredness was worse plus numbness burning in my feet I gets bloods done diagnosed PA and Subclinical thyroid with high Tpo antibodies put on 25mcg I knew nothing of Hashimoto's or PA but I did know that numbness n tingling needed every other day injections till the numbness tingling stopped all I got was 6 loading doses then every 3 months showed them guidelines to no avail I got every 8 weeks I just wished I had of bought my own back then I saw nuerolgist in 2017 who did no tests roll on 2021 I finally gets tested emg says distal sensory nuerapathy no follow up till this year had Mri that was good I hear but still nuerapathy on another Emg test I've had lot of blood tests done now I await the results on an actual face to face with the Consultant as tests last year proved nothing as to why I have nuerapathy it's now in both my feet and legs and it's horrible feeling I only had it in my feet in 2014 previous to 2014 I was fit walking hiking cycling for miles my bike atm is an ornament lost so much leg muscle now its so upsetting I carry on injecting but it's too late I live in hope
yes , do live in hope . I’ve read on here that it can take years to regain what was lost . When one thinks how cheap a B12 ampoule is . And we could be trained to self -inject , like some patients self-inject insulin . It’s possible to inject B12,subcutaneously like insulin . ( that’s written on the German B12 ampoules packets ) I wish you all the best .
I'd agree with wedgewood about keeping self injecting, but I'd talk to your GP too. It may be that you have some other neuropathy alongside, small fibre perhaps, and there are other causes and contributory factors to consider. How is your blood sugar, for example. You don't have to be even pre-diabetic for poor blood sugar control to affect nerve pain. I had nerve conduction studies including thermal threshold testing which confirmed small fibre neuropathy so I am working my way through all of the possible causes. Meanwhile too many refined carbs make it worse! Hopefully your GP will refer you to neurology. Best wishes.
I had exactly the same with my feet. Also felt like walking with stones in my shoes.My issue only actually began AFTER being diagnosed with PA and starting the 6 X loading doses and 3 monthly. (Just proves how things get worse initially before improving)!
A referral to a neurologist confirmed 'Small fibre neuropathy' nerve damage in my feet caused by PA.
After self injecting every other day my feet are so much better now.
I also invested in a pair of Joya trainers and after a year of ever day wearing, it's still like I'm walking on clouds they're that comfortable!
For years I had numb legs and could not feel bath water, did the 'elbow' baby test. After many injections I can feel that lovely hot water again. I also do not fall asleep in the bath as I used to (dropping yet another paperback in the water)
How come everybody was referred to neuropathy except me. I was told (more or less) to get lost.'
I expect I will be told to get lost! I talked to someone who did get a referral in my area and she said neurology were rubbish, very dismissive. I don't have high hopes when I speak to the GP these days.
I have had what I assume is Neuropathy for years but initially didn't go to the doctor because it was such an odd sensation, I found it difficult to describe. I had never heard of B12 deficiancy. When I did tell the doctor he did a blood test and said nothing had shown up. Later a friend who had been diagnosed told me about it and when I looked it up on the NHS website, neuropathy was mentioned. Went to GP who told me he had done a B12 test (in July, it was now Dec,) but at 158 I was in the normal range, but in any case I would have to be deficient for a long time for neuropathy to develop. As I had never had a B12 test before, not sure how he knew.I have twice had neurological tests. First time very superior consultant just said it was my age, more thorough one did spinal MRI scan, and electrical conduction tests, but couldn't find a cause.
I have more recently been diagnosed as deficient again, had loading doses, now on tablets, last test I was 700. It has never had any effect on the sensations in my feet, mixture of stabbing pains, numbness, tingling, toes white when I first get in the bath. The most uncomfortable feeling is one as if my feet have iron clamps on them, particularly after I've been for a walk, and in the evenings.
I have stopped taking the PPIs which I suspect had something to do with the initial deficiency, but think I have it for life
Gosh I'm sorry to hear about your experience. I take a PPI and wish I could come off it, but my stomach won't play ball, the rebound is too hard. It might be easier with tablets (instead of capsules) that I could divide as I taper down. How did you manage it?
I have been taking PPIs for acid reflux from a hiatus hernia. I rarely get heartburn, more silent reflux, which results in coughing, croaky voice, and a painful throat,earache and sinus pain. I had been taking two a day, but realised I was still getting a very painful throat, and other symptoms.Because I was taking oral B12, I was wary of it interfering with the absorption of that, and had been trying B12 first thing, and then PPI mid morning, and evening. GP said it was fairly hefty dose, and suggested trying Gaviscon after each meal, which sits on top of the stomach preventing reflux. I stopped the PPI, and had some discomfort initially in my gut as if there was acid there, but no reflux. I am now swigging Gaviscon regularly, trying to keep closer to not eating things they suggest can trigger reflux, though it is difficult as almost anything that makes eating worthwhile can be a trigger.I have a foam wedge to raise my head at night to reduce reflux. I am finding it is no worse, and mostly better. I find chewing gum with bicarbonate of soda helps with acid in the throat, and easy to carry around. . I did initially take a PPI as a protection while taking Naproxen, but became very anaemic which they put down to Naproxen causing gastritis, and stopped me taking it for my arthritis. I seem to be able to tolerate ibuprofen, so take that as and when.
Sorry for the long explanation, but it really depends on what your specific problem is and how it affects you. Hope this might be helpful.
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