MRI of brain and cervical spine came back normal. Next up is skin biopsy. If this shows up normal then is it all in my head?

no, not necessarily.... chemical effects on the nerves does not show up until the nerves die back. "in your head" implies imaginary to many people. You are not imagining your sensations. If nothing shows up YET then you should be thankful that you may still reverse and heal some.

Mine came back normal as well. Did you request the skin biopsy or did they already have it set up as part of your tests?

The neuro recommended it to me as the next thing to test. I am also planning to see a rheumatologist to do more testing to get to the cause. I feel like this is autoimmune in nature or caused by a virus. I do remember having night sweats for a few nights when my symptoms first started. Also my lymph nodes in my neck are slightly swollen but haven't gotten any bigger.

Update:

Hey everyone,

It's been a while since i've been here. I promised myself I would come back and update everyone and hopefully help or reassure others going through the same thing. It was a real low point in my life but I've been living a normal life and everything is great! To make a long story short, I went to numerous doctors and tried so many treatments and kept searching for a cause. Never found out. Finally got a skin biopsy and it came back positive. I tried IVIG and didn't notice a thing. When my symptoms were first coming on, it started with my feet, then hands, and then it spread everywhere. I'd get random pinpricks, ice cube rubbing sensations, stabbing, and burning in random places including my back and head. My thighs always felt a constant burn, shoulders felt sunburned, and of course my feet. Limbs would fall asleep very fast, especially my hands during sleep. I opted not to start any pain meds because I didn't want to develop a tolerance. I only took prednisone for a few days and my symptoms got noticeably worse. I tried nortriptylene a few times and it didn't do much. Surprisingly, klonopin reduced the pain almost completely. After going to so many docs with no answers, I went to get tested for Lyme. It came back positive for igenex (which I believe is very common) but negative from stonybrook. I honestly don't think it was Lyme but I did take some antibiotics anyway for a few months (azithromycin and minocycline). Eventually I just decided to quit them for health reasons. My symptoms gradually got better and now I don't take anything and I only get slight burning in my feet once in a while. For overall health I do weight training 3 times a week, and take fish oil and vitamin D. I think the hardest part was mental and reading so many doom and gloom stories. But eventually you reach a new baseline and accept it. I honestly forget I even have it now and it hasn't stopped me from living a normal life at all. Been traveling the world and recently got a new job :). Let me know if you have any questions and i'll make an effort to check back or just pm me. Stay positive!

Hey Tunaboy,

Glad to hear you've seen such an improvement in your symptoms!

Out of curiosity, how long did it take from the onset of your symptoms before you started to see improvement and over what period of time did things improve? Which symptoms were the first to calm down as things reversed?

Hey Tunaboy, I recall your story from back when I first started on this journey. I haven't tried as many medications a you have - I was on heavy doses of Gabapentin for a while, but now on just a small dose to take the edge off. (And a number of supplements as well)

Much like you, things have calmed down, and I still feel it every day (especially the feet) - but it doesn't significantly impact my life at this point. It's just become the new normal.

I do like to stop back from time to time and check in. The forum has become pretty quiet since Mrs. D's unfortunate health problems. I was just thinking that this is about the 5 year anniversary of the start of my journey - so decided to stop in and see what was happening.