Hi, everyone!

I wanted to update, as I've been sent to a neurologist who actually seems to be putting in some effort. My pain in my feet has gotten worse, and my tingling/numbness has remained constant. This has been ongoing since October 2018.

No diabetes, B12 has been low in the past but it's climbing (currently sitting at 500), no thyroid issues - I do have PCOS just diagnosed, but other than that, no real oddities in my bloodwork (aside from elevated inflammatory markers that no one has been able to pinpoint).

My neurologist is looking over ALL of my MRIs and the reports. If she suspects CNS (she does not currently), she will order a lumbar puncture.

If she does not suspect CNS based on the MRIs, she is ordering her own EMG/NCS as she is not thrilled with the one the ortho ordered (it is incomplete).

If that shows nothing, she will be ordering a skin punch to look for small fiber involvement.

Her initial impression:

"My strongest suspicion is for a peripheral process, either multiple focal compressive/traumatic lesions, versus radiculopathy, versus more diffuse small fiber neuropathy that may have an underlying autoimmune/inflammatory etiology."

Because my SED rate has remained elevated (except for one lower reading) and my CRP as well, she's leaning more toward autoimmune/inflammatory with peripheral involvement than anything else.

That being said - I've had a full range of Rheum/autoimmune testing.

I think the most important to note for me, would be:

Panel Description: SERUM PROT ELECT @ Final

TOTAL PROTEIN
7.5 g/dL (6.4-8.2) Final
ALBUMIN CALC
4.7 g/dL (3.9-5.1) Final
ALPHA 1 CALC
0.2 g/dL (0.1-0.3) Final
ALPHA 2 CALC
0.9 g/dL (0.4-1.0) Final
BETA CALC
0.9 g/dL (0.5-1.1) Final
GAMMA CALC
0.8 g/dL (0.4-1.2) Final

MONOCLONAL
CALC

NO MONOCLONAL
IDENTIFIED
g/dL (NOMONO) Final

ALBUMIN PERCENT
62.5 % (58.8-69.6) Final
ALPHA 1 PERCENT
2.8 % (1.6-3.0) Final
ALPHA 2 PERCENT
12.2 % (7.2-13.2) Final
BETA PERCENT
12.4 % (8.0-14.7) Final
GAMMA PERCENT
10.1 % (7.3-16.4) Final

I had an immunofixation done in 2016 as well, with no monoclonal proteins identified. I asked the Rheum to repeat and she said that was unnecessary, since it would have shown in 2016, but she repeated the SPEP for my peace of mind.

I guess I'm feeling more comfortable with this neurologist (out of University of Rochester in Rochester, NY) than my last (who completely dismissed me) but when I mentioned perhaps something like Amyloid, she said it can be a consideration because "it can do some weird stuff," though she said it's reassuring I did not have a monoclonal protein.

I've been hyper-focused on amyloid due to my health anxiety, and I'm wondering if my doctor is just being thorough not to rule it out because she knows I've been dismissed in the past, or if it really is something to consider?

Aside from that, I'm at a loss as to what this could be, eating away at my nerves and setting me on fire...

(also to note, I'm 37 years old, female, so neuropathy in general is a bit odd to set in at this age, I'm told)