Recurring Neuropathy
 

Hello All -

I need some advice. Three years ago I started with a burning sensation on the bottoms of both feet which turned into a tingling feeling in both shins. My GP referred me to a neurologist who ordered an MRI of my head/spine which was all clear. She gave me a full physical exam, asked me a lot of questions, and ordered some blood tests for B12 which came back as 412 (she said this was fine) amongst a few other things. She said that I have some sort of neuropathy which she thinks was a result of my body overreacting to a common virus (like a cold or gastro virus) which damaged my nerves. She thought it would slowly go away over a few months. It didn't go away, and although at times the sensations were more intense, it didn't get worse either. So I saw her again 6 months later. When I said that it was essentially the same, she said that I might just "be stuck with it."

6 months after that I saw a different neurologist because I wasn't satisfied with her answer and I was feeling anxious all the time because I was overwhelmed with worry that something that she missed was really wrong with me. It was taking over my life. The next neurologist was extremely nice. He listened to my whole story, ordered a repeat MRI and extensive blood tests for an array of autoimmune diseases and deficiencies and rare things I'd never heard of. The MRI came back clear as did all the blood work. I asked about nerve conduction tests and he said that based on his physical exam of me, he doubted it would be useful because I don't exhibit any worrying symptoms besides the tingling/burning. His advice was to put it behind me and just move on with my life because I'm healthy.

Over the last two years the sensations have faded a lot, never completely, but so much so that most of the time I had to stop and focus on it to see if it was still there. But now, as of last week, it's all come back along with an achiness in my feet which wasn't there previously. I'm really devastated. I had convinced myself that it was gone for good - or at least wasn't going to come back like this. I feel otherwise really well. I'm fit, active, no other health issues.

But, I continue to wonder what they might have missed and what the road ahead looks like for me. Is it common for it to basically go away and come back out of nowhere like this? Should I go back to my GP and ask her opinion or ask for a referral to the neurologist again? I'm dreading starting the process all over and have them tell me I'm fine again.

Thank you very much for any input.

How frustrating
 

and unfortunately not uncommon with this disease.

There are certain things to consider outside the realm of what most neurologists will bring up. For example, your B12 in my opinion is borderline low. I got the following from the sub-forum on top. It was written by MrsD who is/was extremely knowledgeable:

"If you are at 400 or very close, that is borderline and with PN symptoms you could most likely profit by taking B12 as well to raise your level up. I'd suggest to be at least at 1000 for PN patients. Some people choose to go higher yet. Please consult my thread link to read how to choose a supplement for yourself."

Alcohol and certain prescription drugs have been found to cause neuropathy. Eating certain foods like sugar can have an affect. There are certain supplements you can try that could help.

For more information check out the sub-forum PN Tips, Resources, Supplements & Other Treatments. Iff you do decide to see that neurologist again you will be better informed and that can be a help.
carol