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Nerve damage in feet

Lowblow profile image
19 Replies

Morning everyone

can any of you tell me about your experiences regarding feet trouble related to PA .. I struggle like crazy to walk particularly worse as the day goes on .. I mean it’s agony.. in both feet too.. I’m trying to establish if I have nerve damage and have nerve conduction tests booked next week .. I have done a lot of research and I think it could be the Baxter’s nerve that’s the issue where as I’ve previously been diagnosed with plantar fasciitis.. they are both similar and often Baxter’s nerve is misdiagnosed as plantar fasciitis.. I’d be interest to hear if anyone’s suffered anything similar and if you’ve had nerve conduction tests and what they showed ?

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Lowblow profile image
Lowblow
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19 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I don't have a PA diagnosis but get treatment for B12 deficiency symptoms.

I have had many symptoms in my feet over the years.

The weirdest one is that my toes move on their own sometimes. I thought it was a rare condition called "Painful legs and moving toes syndrome" (there's also a painless version) but was told it was a form of Restless Legs Syndrome (RLS).

This symptom improved when I finally started B12 treatment but still have it mildly so I think I have some permanent nerve damage in my toes.

I had tingling, pins and needles and electric shock sensations in my feet. Sometimes they felt very cold all over or had cold spots.

These days the return of tingling in my feet is a sign to me that I need more B12.

I used to get painful cramps in my feet but this symptoms disappeared when I started B12 treatment and also started taking a magnesium supplement.

I've not had nerve conduction tests.

Wishing you good luck with finding answers.

Lowblow profile image
Lowblow in reply to Sleepybunny

Thank you sleepybunny .. I also have suffered with restless arms and legs ..I recently started SI eod and oh my goodness the activity in my feet was wicked .. electric shock feelings all over the place. That has settled a lot but was told it’s nerves repairing .. mine now is the pain and pins and needles plus on and off numbness in my big toe and heel .. just wanted to manage my expectation regarding the nerve conduction tests .. know a couple of people who have had them but they showed nothing !! So frustrating because I’ve actually found when things are found my hospital are actually happy to try and deal with

wedgewood profile image
wedgewood

I was left undiagnosed for a long time with symptoms that turned out to be Pernicious Anaemia. I had to get my diagnosis privately ( Positive for Intrinsic Factor Antibodies ) After 5 loading doses ( Yes that’s what you get in Gloucestershire , instead of the 6 in the guide-lines) and subsequent 3 monthly maintenance injections of B12 , my symptoms were returning , and my feet were still totally numb . My GP said the numb feet had nothing to do with P.A. Diagnosed them as “ Idiopathic “ ( what a cop-out !)

After a few months of finding this forum , and how to self-inject , my feet managed to recover from total numbness to a burning hot sensation .( but my feet are normal temperature to the touch ) They also feel as if i’m wearing shoes that are 2 sizes too small . This is now permanent I’m sure , after 9 years of self injecting weekly .

Although my numb feet were diagnosed as “ Idiopathic “ , i never got a nerve conduction test , or a referral .Unfortunately at that time I was totally naive , and did not pester the GP . Just thought there was nothing to be done .

I have to be glad that my feet are no longer numb .

Ritchie1268 profile image
Ritchie1268

I had nerve conduction tests which showed small fibre neuropathy.It was as if I was walking with pebbles in my shoes, very painful.

It has improved to what it used to be when first diagnosed over 3 years ago, but I still struggle if I'm on my feet a lot or walk a long distance.

Though expensive, I bought some Jòya trainers which really help as they're so comfortable.

Hope you get sorted.

Lowblow profile image
Lowblow in reply to Ritchie1268

Thank you for your response ..I’m pleased to hear that small fibre neuropathy does show in these tests as I’ve read that it doesn’t .. I’m sorry to hear you had it of course !! .. feel really anxious that it won’t show up as read so much that it doesn’t always show .. Roll on Tuesday … at least then I’ll know .. such a shame that we have to prove everything instead of being believed that we are suffering these deliberating symptoms.. after all who wants to be bogged down with symptoms if they aren’t there ? .. this is what I don’t understand with the doctors .. someone starts coming to you saying I feel like this this and this wouldn’t be doing so unless they generally felt like that would they !!

Ritchie1268 profile image
Ritchie1268 in reply to Lowblow

We definitely don't make this stuff up do we!Good luck on Tuesday, I hope you get some answers 🤞

Phylenejo profile image
Phylenejo in reply to Lowblow

B vitamins and massage helped me😉

earthnymph profile image
earthnymph

hi, I hope you have some answers from the tests. Don’t lose hope, whatever the outcome. I had a numb big toe for around 8 years, was told it was various things including trapped nerve, diabetes nerve damage (diabetes wasn’t diagnosed for a lot of years) but when I started si the feeling came back after a few months.

I’ve also had dreadful plantar fasciitis, insoles from podiatrist help, still some pain in foot arches but not bad now.

good luck!

helvella profile image
helvella in reply to earthnymph

My plantar fasciitis resolved as I was diagnosed and treated for hypothyroidism. (Only levothyroxine.)

WIZARD6787 profile image
WIZARD6787

I experienced nerve pain in my feet and elsewhere.

After a review of everything I had read and my medical chart I determined that I might be B6 deficient as well as B12 deficient. I also decided if I was B6 deficient there was no possibility the physicians I hired were competent to make the diagnosis.

I injected 80 mg of B16 on January first, 4 hours later the pain was reduced dramatically and I slept 8 hours for the first time in 2 years. When I woke up the pain was further reduced.

I then injected 30 mg daily for the next 6 days. On January 6th 2022 I went tubing with my daughter who is 36. It was wonderful.

I injected 30 mg for a month.I now take 50 mg a day sublingual in a lozenge. If I skip a day I can tell.

B6 deficiency is rare. The physicians whose work I have read all note that it may just be rarely diagnosed. It is typically diagnosed clinically which can not happen when a physician ignores symptoms or makes up a diagnosis. It is rarely diagnosed without other deficiencies.

I have only numbness in my toes at night. Some pain in my shoulder which I expect will go away with exercise. The numbness I have no idea but am hopeful.

My liver functions are now within range which is known to happen with non-alcoholic liver disease when taking B6.

KEFNB profile image
KEFNB in reply to WIZARD6787

It’s good to hear you’ve found a solution WIZARD6787. Would you offer the name of the article or the author that your found so helpful please? I had numbness in my feet from PA which is largely resolved, but I also have “ old nerve damage” from a herniated disc ( I had a nerve study done) I’m looking for ways to heal that nerve (S1) and the only thing the neurologist said was “ it’s very difficult to heal old nerve damage”

WIZARD6787 profile image
WIZARD6787 in reply to KEFNB

It was a while ago and I basically researched B6 deficiency and nerve damage in general.Pretty much it came down to it was worth a trial and the trial was a success.

It is far from mainstream.

WIZARD6787 profile image
WIZARD6787 in reply to KEFNB

Perhaps the books you are referring to was ones I mentioned in a different post or comment. In case that is the case. One book was "Vitamin B12 Deficiency in Clinical Practice" Thank you doctor for getting my life back by Dr. Chandy. The other was "Could it be B12" I do not remember the authors names.

Both are monumental. The story of Chandy and how he stood up to those who could not treat B12 deficiency and tried to take his licence away is remarkable.

earthnymph profile image
earthnymph in reply to WIZARD6787

hi, interesting, I found info a while back on b6 and ‘Morton’s toe’ (not Morton’s neuroma) - in essence second metatarsal joint on foot longer than first, causes plantar problems, and relates to inability to convert b6 into p5p (b6’s usable form). Also relates to menstrual problems. I took p5p supplement for awhile but didn’t notice a difference in foot pain, I’m menopausal so wouldn’t know about menstrual benefits 😊 I’m sorry I can’t give references for info, I didn’t keep it, I hope I’ve remembered it reasonably accurately.

WIZARD6787 profile image
WIZARD6787 in reply to earthnymph

Interesting and good information. Thank you!I was diagnosed with plantar fasciitis by a podiatrist 25 years ago. He ethically suggested that I try Superfeet, an over the counter sole insert and don't wear the same shoes all the time. As long as I do that I have no issues. If I slack off I have no issues.

The podiatrist said if the plantar fasciitis does not improve in 2 weeks and is not completely resolved in 45 days to come back and see him.

PaintLadie profile image
PaintLadie

Funny I have plantar too. I wasn't diagnosed, but am familiar with it. Although my plantar goes away when I don't eat sugar or food I'm sensitive to. My big toe is numb. It used to just be the tip that was numb, but during the big shut down of planet earth I lessened my shots to twice weekly (ju🙄st in case) and by the end of it all about half of the bottom of my toe is numb. It is also painful and uncomfortably weird especially when trying to go to sleep. If I skip a shot the pain beneath the numbness comes back and the numbness seems to creep further down my toe. I did end up not being able to get my B12 filled for a period of time so spreading my shots out in the long run was the right way to go. I guess It could be worse than just a numb big toe. 😅I also get random shooting nerve pain under my toe nails and in random places in my body usually worse if I miss a shot, but still just random even when I'm up to date. I am supposed to take my shots daily but am doing them every other day.

Lowblow profile image
Lowblow

thank you everyone some very interesting points .. my feeling of plantar fasciitis I think are actually Baxter’s nerve related after doing much research

rastusxxx profile image
rastusxxx

I used to have a numb patch on my leg and it went away after I had my B12 reloaded. As I understand it and correct if I am wrong, but nerve damage can occur but it may be reversible if caught in time. I think this is my experience. Good luck!

Smiley999 profile image
Smiley999

Hi low blow,

Sorry to hear that you are having problems with your feet. Prior to my diagnosis, the doctors and physio were treating me for plantar fasciitis. The pain when I walked in the sole of my feet was severe, along with burning and the more I walked the worse I got. At one point I could only walk about 20 feet. After about 2 year’s of suffering and after a normal MRI, I was finally diagnosed with Vit B12 deficiency. The injections have given me tremendous relief and I can now walk for about 3 miles at a time. I still get some burning and cramps in the soles of my feet but have significant improvement. I never had nerve conduction tests. Hope this helps and you find relief.

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