Seeking advice re diagnostic testing for nerve pain (peripheral neuropathy)

[RightHere]

Hello all,

I'm seeking advice on tests and info that would be helpful in seeking a diagnosis for my partner’s expanding neuropathy. He is a month out from a first neurology appointment and I would like to maximize it.

My partner has experienced nerve pain & numbness (peripheral neuropathy) in the bottoms of his feet as well as transient numbness around his behind and an area on his torso.

The first symptoms of numbness in the feet started 6 months ago when he also had vertigo caused by nerve damage of the inner ear (vestibular neuronitis). The vertigo has largely resolved at this point (one's brain starts to compensate for the damaged nerve), but the nerve pain in the bottom of both feet has greatly increased in the past two months and the other areas of numbness have surfaced in the past few weeks.

These nerve issues (vertigo and numb feet) first surfaced 4 months post-end of treatment just as we thought his post-treatment mono-like malaise was lifting. I’m not necessarily pointing to treatment as causal and I welcome all input. We are, for example, aware of the connection between HCV and peripheral neuropathy caused by cryoglobulinemia—although my understanding is that the best treatment for that is usually successful HCV treatment which had already been accomplished prior to these symptoms.

As it stands, blood tests indicated that the neuropathy is not caused by diabetes (blood sugar is normal) and his family doctor just indicated that a recent full spinal MRI did not point to any spinal issues/nerve compression. Other regular blood tests also deemed normal by primary doctor (liver enzymes, thyroid etc) although I do not have the test names and results in hand.

In order to get a jump on ruling immune system issues and/or cryoglobulinemia in or out, someone suggested that we request a blood panel for “rheumatoid factors, smooth muscle and anas”. We now have those test orders from the primary doctor, but frankly I’m not sure who would be able to interpret the results – the primary says that it would be out of his expertise. Will the neurologist be able to interpret these tests?

I welcome any suggestions of other tests to request from the neurologist and others.

Many thanks. I appreciate the wealth of knowledge and experience available from generous folks in this forum. Your thoughts are very welcome.
RH

[KimInTheForest]

Hi RH! it's been a while. So sorry to hear your partner is (still) having problems post-treatment.

In my case, an internist with a specialty in liver disease ordered and interpreted my immunology panel, in an attempt to sort out my post-tx probs. Nothing significant was revealed from those tests. But I would say an internist is perhaps better able to interpret those results than a neurologist. But of course, I am just guessing on that...

As for the peripheral neuropathy... that seems to be a nearly universal symptom of people with pernicious anemia (severe B12 deficiency). (I have learned that recently from another forum I am on.) So, even if your partner doesn't have pernicious anemia, perhaps a daily sublingual B12 supplement (1,000 mcg) would help with the peri neuro? And of course, it wouldn't hurt for him to get a B-12 test if he hasn't yet.

Do keep us posted!

best,
kim

[gnatcatcher]

RH, if the neurologist can't interpret those results, a rheumatologist can (perhaps the neurologist will phone a rheumatologist, thus saving you yet another visit/copay/etc.)

Best wishes,

Gnatty

[RightHere]

Thanks Kim and Gnatty--appreciate your responses.

Kim, I will take a look at that. I think he had some vitamin testing, but I will check to make sure that B12 was done. I'm assuming here that a normal B12 level would rule out pernicious anemia?

I hope you continue to see improvements in your health. Your determination has been inspiring.

Gnatty, thanks for the pointer to a rheumatologist. I'll find out if there is one in town. The challenge here is less one of copay (Canadian health care) but more about getting access to specialists in a small town. The neurologist only comes one day a month thus a 3 month wait to get an appointment.

best,
RH

[KimInTheForest]

Kim, I will take a look at that. I think he had some vitamin testing, but I will check to make sure that B12 was done. I'm assuming here that a normal B12 level would rule out pernicious anemia?

At my lab, the reference range for B-12 is 150-650 pmol/L. And I think that is pretty standard in North America. My own B-12 levels last September when I was tested were 225. Within range, but I feel higher would be better/healthier. So I have been taking 1 sublingual B-12 daily ever since (1,000 mcg).

I have read that you must stop B-12 supplements 4 months(!!) prior to a B-12 test, or the test will just be measuring what you ingested, not what's actually stored in your body. Four months seems ridiculously long to discontinue usage prior to a blood test. But I don't know.

Have also read (many places) that you don't want to take B-12 long-term without taking the other B's. So I also take a B-complex vitamin daily so I don't get 'unbalanced' on my B's. B vitamins in general (esp. B12 and B6) are very important for neurological things. So it wouldn't be a mistake for anyone with neuropathy to add B12 and B-complex to daily regimen, imo.

Also, you will come across a lot of references online to Japan setting the lowest acceptable limit for B-12 at 600, thus making virtually all North Americans B-12 deficient. Apparently this is one of those unsubstantiated rumors that races across the web like wildfire. No one can actually produce the purported study on which this claim is based.

It took me a ridiculously long time to see my health rally after enormous post-tx health collapse. But I am now feeling pretty much as healthy as I felt pre-treatment. It took me 11 months post-tx to get here - and a lot of that 11 months was extreme and undiagnosable illness that had me housebound and even bed-ridden for periods. Unfortunately, my lab work has NOT caught up with what my body is telling me. My labwork shows worrisome anomalies. Doctors still think I may have a serious health problem. I assign more weight to what my body is telling me than to numerals on a printout from a lab. But I continue to go for tests that are non-injurious and non-invasive.

Keep the faith!

kim