Symptoms that come & go & neuropathy what comes 1st.

[Caro44]

Hi, I am asking a lot of questions. i hope that is ok. I am trying to figure things out. Last January, I started getting severe pins and needle and frozen pains. In my toes at first and on my face, bladder, and then fingers to elbows and toes to knees. I thought it was my small fiber neuropathy healing itself because I had done a treatment for Lyme disease. After awhile the pain stopped everywhere but my feet. So it made sense it was going away to me. But it stayed in my feet 24/7. Then this October, it started to go back up my legs again, ankle then calf. Then in November, it occurred to me maybe it wasn't healing but new damage and had blood tests and am now panicked reading that this type of neuropathy doesn't go away after 6 months.

But, in 10/2015, I was diagnosed with small fiber neuropathy from my toes to knees and fingers to elbows. I felt no pain at all. Just couldn't feel the dr's tuning fork and other cold instrument he used. I recall not feeling my feet when I was pregnant 11 years ago. But that feeling went away. I was diagnosed with periodic limb movement disorder in 2012 which I now think is related to low B12 and neuropathy. This is why i thought the pain was my nerves coming back. I have read that when nerves come back they only hurt about 30 minutes a day, not 24/7, so I can no longer believe this.

My questions are: Do other people have symptoms that come and go? And, if you have neuropathy did you get numbness first and then pain. Is pain- the freezing feeling and pins and needles a more advanced damage than just numbness? Thank you for putting up with all my questions. I am a total wreck and hate myself for not putting this together sooner.

[AnnaKatrina]

Hi Caro44

There are far more knowledgeable people than myself, who can answer your questions here.

But, I can empathise with your concerns over, the uncertainty of not knowing, the possible consequences of nerve damage.

I also have issues with nerve damage in my feet. My symptoms have fluctuated greatly from first having these symptoms 2 years ago, and only receiving b12 For the past 6 months.

Initially my symptoms became much worse upon receiving b12 injections, which lasted 15 weeks. Then they 'miraculous' improved, & I thought all was well! However, since then, I've had multiple 'flare ups', which even though I keep a log, there seems to be no reason I can pin point why it's happening.

That said, there can be numerous different possibilities that may be causing the sporadic healing,. Including, other vitamin deficiencies or interactions. Or that as I have started to feel better within myself, I am now more active and on my feet more. Or things I'm not even aware of.

I have never heard of the '30 minute a day' idea, and on bad days, my pain, & burning can be 24/7 like you experience.

Ultimately though, everyone has very individual responses to, & need for b12. Knowing this, is very encouraging, & I would like to reassure you that it's highly likely your symptoms will improve, but it's just not possible to say how long it will take. But you're not on your own, many of us are on a similar path to yours, which I hope will help you to feel less isolated

Kindest Regards

AK

[may61]

I think we are all different. Had tingling in hands and feet all year, and only by chance B12 deficiency was diagnosed but Doc still not diagnosed PA. Unfortunately Doc as they do !!! didnt give me the loading doses correctly and everything got worse .Fought very hard and he gave me another lot of loading doses at beginning of this month,so I knew my B12 level was about 1000 at that point, which i believe it needs to be for repair(Think he must have read something finally) I added sublinguals but it was only when i added folic acid, i started to feel better,maybe it just my time .I didnt know until a few days ago that i had numbness in my right side, had felt like a dead leg feeling in bed at night for weeks.Have gained loads of knowledge from everyone on here ,and it all helps to build a picture I feel very naive about all this.Hope it all becomes a little clearer for you take care.