[gailveronica]

Hi, Everyone!

I've had tingling that started in the front of my left shin for about a year now (since October 2018). It spread up to my knee and front of my thigh.

I had a brain MRI (clear) a lumbar MRI (clear) and a lumbarsac x-ray (clear). I've had multiple blood tests, only raised ESR (36mm at the highest) and CRP (1.5 mg/dl), but rheumatologist and neurologist both said those could be due to obesity, not anything concerning. ANA markers are negative. No diabetes. No MS.

My left elbow and left side of my face also tingles. My tongue burns at times.

Within the past 5 weeks, my foot began to hurt and got numb below the ankle. Orthopedist says it's Sural Neuritis.

My neurologist asked "is this something you can live with? then you graduated from me."

I don't feel like that's helpful.

I'm not sure where to go with this - I feel like something is wrong, and why are they not testing? My neuro didn't even do any nerve conduction? What on earth?

I'm terrified I have something like amyloidosis because nothing else is showing up... do I keep pressing?? I have toenail fungus (and have for 5 years now) but I read that could be due to amyloid deposits. I'm so scared. I don't really know what to do here. My doctors have all put this up to anxiety and just "idiopathic" neuropathy without thorough diagnostic testing.

Has this happened to anyone else? I don't know what to push for? Nerve conduction? Biopsy? Do I worry about amyloid or is that a longshot?

[gailveronica]

Looking back over my testing from 2019, I see the following:

CBC w/diff: nothing stands out
CMP: nothing stands out
ESR: 36 mm/hr
CRP: 1.5 mg/dl
Lyme: negative
ANA: negative

MRI lumbar: clear

MRI brain: A few foci of subcortical, periventricular, and deep white matter T2 FLAIR hyperintensity which are stable and nonspecific but can be associated with demyelinating disease in the appropriate clinical setting.
There is a subtle T2 FLAIR hyperintensity in the left posterior frontal cortex, image 4 series #4 which is of uncertain significance.

3 years ago I presented to my GP with vertigo / heat intolerance / overall feeling of illness. I was sent to a neurologist who ordered an MRI and said it might be MS. My MRI from 3 years ago looks the same as my MRI now (with lesions), so new neurologist said it is *not* MS.

A rheumatologist ordered (2016):

PROTEIN ELECTROPHERISIS which included:

Serum Protein Electrophoresis: An increase in acute phase reactants, suggestive of an inflammatory process.

Serum Immunofixation: Polyclonal immunoglobulins. Negative for monoclonal paraproteins.

My question is - since these were ordered 3 years ago, would it be beneficial to have my rheumatologist test again? My tingling/numbness began over a year ago, so it would have been 2 years between testing and new onset of symptoms.

Or, should I continue to press my neuro for a more extensive workup?

[glenntaj]

--and you can use these documents as guidelines:

Quest Diagnostics: Test Directory

An Algorithm for the Evaluation of Peripheral Neuropathy - American Family Physician

[gailveronica]

Thank you, these links are perfect.

I'm actually scheduled with the rheumatologist again this week. While I can't imagine the immunofixation would have changed within 3 years, I'm going to have them re-test that along with some other bloodwork from this chart, if they are able.

My neurologist still hasn't called back after leaving several messages. Probably time for a new neurologist...

[gailveronica]

I'd also forgot to mention - my B12 is on the low end of normal - it reads at 303 when the range for the lab is 180-914. Could the 303 be the cause of tingling, nerve pain, and even a numb spot? (tinel's sign positive on sural nerve, btw, not sure if that matters?)

[echoes long ago]

Originally Posted by gailveronica

I'd also forgot to mention - my B12 is on the low end of normal - it reads at 303 when the range for the lab is 180-914. Could the 303 be the cause of tingling, nerve pain, and even a numb spot? (tinel's sign positive on sural nerve, btw, not sure if that matters?)

yes....you need to raise that b 12 level. in other countries 303 would be considered to be low and problematic. take at least 1000 mcg of methylcobalamin b12 a day. if you do a search of b12 on this site, there is a wealth of information.