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)

Another quick update:

Apparently, I've never been tested for diabetes, celiac, or even the more sensitive Lyme testing. I am not at all impressed with my care up until this point; but I'm hoping this new neurologist is thorough, as the nerve pain in my left foot intensifies.

I appreciate everyone's feedback here and in other parts of the forum, it really is comforting to know that we're not alone (though it would be more comforting to know this pain would subside).

Be well

Be sure to let us know the outcome of your next visit.

Yes, let us know. Hope you find an answer.

Kitt

An update:

I've been seeing a specialist at Strong Memorial Hospital in Rochester, NY. She's very thorough and went through a lot of questions / answers with me before recommending me for yet another NCS / EMG with a neuromuscular specialist. The recommendation came in June, the appointment was this past Friday. Because my symptoms are so odd, and my previous EMG did not show much of anything, after the Nerve Conduction proved to be normal, the neuromuscular physician offered another option, aside from the EMG (which he didn't expect to show anything for my sensory symptoms) - an ultrasound of the nerves. Now, because of the small size of the sural nerve, and the rarity of it being affected, no true conclusions were made. However, they did note a small size difference (30% larger in left leg than right) which suggests inflammation.

Because of this, my neurologist called me yesterday and said that she thinks I have sensitive nerves due to my PCOS / B12 deficiency (that I had at one point) and any nerves close to the surface (such as the sural nerve), once irritated, may stay irritated for quite some time. She is not recommending a skin punch biopsy to look for small fiber involvement. She, along with the neuromuscular specialist, believe that further testing is no longer warranted.

I suppose this is something I will be able to live with, though I'm starting to get more pain in my big toe, and now in the ankle of my left foot. But nothing is symmetrical, nothing is super spread, it's all very pin-pointed and nothing is keeping me from performing daily tasks. Pain, numbness... I guess I'm at the end of the road? Including these 2 specialists, I've also seen a rheumatologist and another neurologist, all who appear unconcerned. Initially the concern was MS, but since that's been ruled out, any other concerns seem to surround pain management rather than finding a cause. Is this all there is? I suppose time will tell.

Did they explain how long you could be potentially dealing with this?

They did not, as they can't predict how long nerve pain will last. Also, because there is no known etiology, there really is no treatment plan or recovery plan. I just deal with pain/numbness and cross my fingers and hope it doesn't get worse (even though it is getting worse, but hey, guess it's nothing so...).