PN (I think!) for the past 4 months

Hello,

For the past 4 months, I've been experiencing symptoms that sound mostly like peripheral neuropathy, but I remain confused, concerned, and not conclusively diagnosed at present. I've been to see doctors at Mayo Clinic - Arizona, and they continue to work with me, but as of yet have been unable to come up with a conclusive diagnosis. The majority of my tests so far have come back "normal" (not surprising, I'm sure!), and I have sensory evoked potentials and a nerve biopsy scheduled for a few weeks from now. There seem to be so many possible disorders that could lead to these symptoms - no wonder doctors have a hard time pinning it down!

I was hoping I could describe my symptoms to the forum, in the approximate order that they have been received, to see if the community has any helpful suggestions for me. The post is likely to be fairly long, as I want to be as complete as possible. Thank you in advance, all.

My longest lasting symptoms involve most of the usual suspects: pins/needles/buzzing in both arms and legs. Up until just recently, the symptoms have been mild enough that I could never quite tell whether they were pins, needles, buzzing, burning, twitching, or whatnot - the best way I could describe it was as "white noise, were white noise a sensation". Recently they've escalated some, and I can feel specific pins, and specific burning sensations.

At about the same time that the sensory symptoms began escalating, I also started experiencing more motor-related symptoms. EVERY muscle in my body feels stiff; as if they're all contracted all the time. I wake up with a stiff neck and a stiff lower back, and my arms and legs feel like I've just worked out at the gym. I'm getting some calf soreness, mainly, I think, because my muscles ARE contracted, and walking on these contracted muscles is leading to mild injury to the muscles.

I also get some stabbing pain. Sometimes in my arms or hands, sometimes in my leg. Sometimes in my head, or behind my eye. Once *in* my front tooth (yes, I know the tooth has no nerves, but I swear to you, my tooth was throbbing. These referred stabs of pain are quite rare, however, and I would not consider them primary symptoms at this point.

I do have some symptoms that I believe are somewhat more unique, as well.

First, the sensations are also in my ears and scalp, and sometimes my face. The sensations in my face remain quite mild at present, but the back of the scalp, essentially covering my occipital lobe, is one of the primary sites of my tingling/stiffness. As are my ears. And let me specify: it's my inner ear, which leads to an experience of "fullness" similar to that which one feels when they're on an airplane. Has anyone else experienced sensations in these regions? Is it still considered "peripheral" if it's affecting the cranial/facial nerves? Or would this suggest another issue?

Second, my neuropathy hasn't progressed in the standard "gloves-and-stockings" pattern. In fact, what confused my doctors the most was the "splotchy" nature of the sensations. I felt it in my wrists, but not my hands and fingers, in my calves, but not my feet and toes. From what I've read, the neuropathy usually hits the most distal targets first, and then "dies" back. Would the "splotchy" nature of my symptoms suggest a demylenating disorder?

Finally, all of these neuropathy symptoms were predated by significant gastrointestinal issues (which have, however, resolved somewhat). For two months prior to the onset of my neuropathies, I had diarrhea, cramping, bloating, abdominal pain, heartburn. Bad enough that I was seeing a GI specialist, and was about to have a colonoscopy (which I'm probably still going to have, just to be thorough and safe). As I said, the GI issues have resolved themselves considerably, but I've never had any GI or neuro issues in the past...and so the fact that both systems went a bit haywire at once seems to coincidental to ignore.

And there you have it. To date, I have had: a million blood tests: all normal. Brain, cervical and thoracic MRIs: normal. EMG: normal. Nerve conduction studies: normal. Mayo has tested me for vit B deficiencies: nada; for auto-immune antibodies: so far, nada; for signs of cancer: nada. As I said, the sensory evoked potentials test, and the nerve biopsy are scheduled for two weeks from now. So far, the diagnosis is "idiopathic neuropathy", which, as I'm sure all readers of this post know, is equivalent to "who the hell knows".

Anyone else have any suggestions?

Thanks!
Matt