Pins and Needles when feet get warm

I am new to this board, My apologies if this hasd been discussed before.

I was diagnosed with PA about 10 years ago. I suffered 18 months of pins and needles in the feet before the PA diagnosis was made so I imagine there may have been some minor damage to the small nerves. Started once a month injections and everything was fine until about 2 years ago when the pins and needles in the feet started again. The strange thing is that I am fine unless the feet are warm and then "pins and needles" kicks in. For instance, having my feet under covers at night makes the feet warm and hence the reaction. I have the feeling it has to do with a combination of being horizontal and feet getting warm. I still get once a month of B12 injection but they don't seem to make any difference. I am otherwise perfectly healthy - exercise regularly, eat smart, sleep well and so forth. All blood markers are normal. I haven't check the Folate lately but it was 15 in 2010 and 9.5 in 2013.

I would appreciate any words of wisdom from all the PA friends on this board?

[clivealive Forum Support]

Hi Hidden I've had P.A. for 45 years and (was originally) also on four weekly B12 injections (cyanocobalamin) and many years ago noticed a return of some neurological symptoms such as pins and needles, burning legs and feet at night etc in the third and fourth weeks.

Six years ago I took up the fight with my "one size fits all" GP who said that they cannot be caused by the P.A. because I was getting the B12 injections and that it was all in my mind - and was I depressed?

I then joined the Pernicious Anaemia Society and discovered that I was not the only person in the world who felt the need of more frequent injections in the run up to my next scheduled and have succeeded this year in getting them every three weeks now.

It could be that you need your B12 more frequently too.

As to your "falling" Folate levels (what was the range used?) - Folate gets "used up" processing the B12 so it would be a good idea to get it tested again just in case you are deficient and need to supplement.

I wish you well for the future.

[fbirder]

There are lots of possible causes for your neuropathy. It's unlikely that neuropathy caused by a B12 deficiency that's been successfully treated for 8 years would suddenly get worse again.

Your folate levels look OK - normal ranges are 2-20 ng/ml or 4.5-45 nmol/L.

I would ask for a referral to a neurologist. They'll be able to do some tests to try to pin down what the cause is.

[Allyson1 in reply to fbirder]

Is it possible though that their need for b12 has increased?

[BigCatFreak]

Hi Hidden I was diagnosed with pa 20 yrs ago and had monthly cyano shots ever since. Except for varying degrees of fatigue & fog I thought I was managing just fine. Sometime in the last 2 years my fatigue & fog have worsened and now my symptoms include neuropathy. I have been SI every other day for the last 3 months & haven't felt much improvement but will keep at it in hopes that it will eventually. I get the same pins & needles when my feet are warm! Weird huh? So my feet are always either freezing or on fire with pins & needles...I sleep with my feet hanging out of the covers off the edge of the bed. I've had 2 visits with a neurologist, which I recommend, he gave me gabapentin which helps some at night but I can't take it during the day or I would be slumped over asleep at my desk at work...more than normal 😴

I wish you luck...let me know if you find something that works!