Hi AussieDebbie,
How are you doing? I was just wondering. Do you have a dx of Neuropathy? You sound like your having Neuropathic pain. I read in another one of your posts that your B 12 was "low". Does your Doc think that is the cause of your symptoms. What kind of symptoms are you having? And are you taking any medications (besides supplements) for your pain? I suffer with I-SFN (Idiopathic small fiber neuropathy). The Doctors, after 3 years still can not find a cause. I take 275 mgs Lyrica,which is not helping with all the pain. My B12 was low (375) 3 years ago, when my symptoms started ( tingling in my calves and burning under my feet). I thought the "low" B12 level was the cause of my symptoms, so I took 5000 mcg of Methl-B12 a day for many months. My B12 went up to over 1500, but unfortunately it didn't make a difference in my pain. I love how you explain how you deal with your pain. The only thing that works for me, is I have to go somewhere private (at home) and cry it out. Nothing else I do can "distract" me from this dreaded pain. I Hope your doing ok![/QUOTE]

Hi Marie,

It's been approx 2 years since my pain started, but only a year since I first went to see my Doctor about it. Started with a heated feeling under the feet which came and went. Being perimenopausal at the time I simply thought it was a hormonal thing, so ignored it for a long time, until it really started to attack, burning, electric shocks, stinging.

This year I've had blood tests, MRI, nerve conduction studies, etc. but both my Doctor and Neurologist are at a loss. All my tests come back normal.

Although my B12 was very low, my Doctor didn't think that was the cause. My Iron was also very low, on the cusp of Anemia, so he put me on iron supplements and told me to take a B12 a few times per week.

So, at this time I have still not been diagnosed, and its looking unlikely, so I've been trying to self diagnose.

At the moment I suspect Pernicious Anemia. It fits. So rather than get into a debate with my Doctor ( who laughs as though its cute whenever I offer a suggestion ) I'm simply going to run with Pernicious Anemia and self treat. It will either work or not, but at this point I have nothing to lose.

Currently taking 150mg Lyrica twice per day, and 100mgs Tramadol slow release. Also have some regular Tramadol to help with extra pain flares. All of this works quite well, but I'm not keen to take these drugs forever. Hopefully B12 will help me lower the pain medications, or even stop them all together.

I'm so sorry that B12 didn't work for you. But I've heard it can take ages! I'm going to try it for at least 6 months. I've read that even if lack of B12 is the underlying cause of neuropathy, if its not caught in time the nerve damage can be permanent. In that case it's still important to continue taking B12 for life to avoid further damage. So for me this will be for life whether it helps or not.

Thank you for asking how I'm doing. It's rare these days, because people around me are afraid I'll bore them with details. We are meant to say "good thanks" , not tell the truth. Lol

It's therapeutic to talk about it. Thank you so much!

I would also very much like to hear how you are doing. It's good that you know it's small fiber. My Neurologist didn't want to put me through the test to find out, she saw no reason.

Anyway as you can clearly see I can talk under water. Thanks again for your concern, lets stay in touch please.