Diagnosis Stage
 

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?

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?

Probably--
 

--and you can use these documents as guidelines:

Quest Diagnostics: Test Directory

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

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...

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.

Thank you! I have sublingual tablets that I will start taking. 5 years ago when vertigo presented by b12 was around 200-300. I was getting b12 shots for about a year but my neuro retired and I stopped. Most recent reading from 12/2018 was 303. I’m sure it’s been teetering on that for 4 years. At least. I appreciate the boards and the advice!

Just an update:

Went to a rheumatologist, monoclonal disease was ruled out (thank goodness, was worried about myeloma as my uncle died of it, and amyloidosis because I'm a hypochondriac and saw it on the internet). ANA is negative. Rheum factors are negative. SED rate dropped from 36 to 11 (hooray!) but CRP remains elevated at 1.1 (rheum said that is not of much concern).

B12 levels have improved - from 200 to 500. I still have some issues.

Orthopedist ordered nerve conduction and EMG, which I just had done Monday. They are both normal.

My left sural nerve area (heel/bottom of foot) is still numb to the touch and VERY painful when I flex my foot with my leg out (ie: walk lol), tingling all over my left leg (shin, thigh, both on the front and back), The left side of my face tingles, and my left fingertips are starting to feel tingling / odd as well.

I'm seeing a new neurologist as mine said "go to the ER" then said "well if you don't want to do that just wait and see" without seeing me, only hearing my worsening numbness over the phone. So that's cool. New neuro is in April. (to be noted, I do have lesions on my brain, my first retired neuro said he suspected MS but retired before I had a 2nd "flare up," the new one said "this is a healthy brain" and dismissed me immediately).

I'm not sure where to go with this, I have no idea what could be causing it? I don't want to google due to my hypochondria, but the constant numbness in my heel / sural nerve is concerning to me, as well as the new onset tingling in my left toes and left fingertips. I feel like I'm going crazy - I started seeing a therapist for my health anxiety / generalized anxiety but I know this isn't all in my head, especially since I have actual tearing pain / numbness now instead of "burning / tingling" (which seems to make people not believe you).

I feel so exhausted (and broke!) by this process... sigh.

OP: I have the tingling down my right shin mostly and this is side of body I had hip replacement.
For me, Topricin homeopathic lotion is my best friend for all this...I can't imagine not having my supply -- the comfort this Topricin brings me.

And my B12 levels have always come in high as I've been taking Methyl B12 for years.

There is so much good info here for the PN issues and I am one who does not count on doc's drugs for help. I use all supplements and am much much better off... The longer one lives, the more they learn.

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...).

Hey Gailveronica,

You sound fed up and in increasing pain and the doctors are not taking your symptoms seriously. I hear you. I have been there.

You have painful symptoms, and the medical world has provided no known aetiology, no treatment plan and no recovery plan. That's pretty much, more or less, the situation of everyone with Peripheral Neuropathy bar a few clumsy painkillers.

I came to the conclusion that I had to make my own recovery plan. I had to take responsibility for my own health and wellbeing. This is my plan in a nutshell.

1. Adopt a positive mental attitude. Abandon self pity and victim mentality.

2. The body will heal itself wherever possible. Create the optimum conditions to maximise self healing. Research. Research. Research. This act alone will help create a sense of hope and direction. Consider:-
a) Diet and Nutrition
b) Exercise
c) Rest and Meditation
d) Cultivate positive friendships

3. Gratitude. I learned to count my blessings. There are worse things that could happen. A lot worse. My symptoms are not the end of the world.

4. Develop a sense of humour about my condition. Don't take myself so seriously.



Oh and don't cross your fingers, that'll make things worse!!