[Ken3]

Hi, all,

I've been a lurker in this forum for several years. I don't recall seeing a case like mine, but I might have missed it, as there is so much info here.

I have a very slowly progressing PN that began with tingling in the toes on one foot about 6 years ago. About a year later, the tingling began in the other foot. A few years later, when I curled my toes, it felt like there were cotton balls stuffed under them. The last couple of years, I've started to feel a tightness in my lower calves (and have also become very prone to muscle cramps in the calves and feet -- may or may not be related to the PN).

Earlier this week, I finally had a nerve conduction study performed which had a lot of very technical terms, with everything normal except:
Normal latency with low amplitude in the left sural sensory NCS.
Normal latencies with low amplitudes in the bilateral superficial peroneal sensory NCS

The conclusion was:
Distal and symmetric, axonal sensory peripheral polyneuropathy affecting the bilateral lower limbs
Which I interpret as, tingling in my feet.

Bloodwork has eliminated many possible causes, but not hinted at any possible culprit.

My PCP said he can get me a consult with a neurologist if I want one. But based on what I’ve read here and elsewhere, I’m unsure whether that is going to accomplish anything other than cost a great deal of money. (I would gladly pay that money to find a cause, but the odds seem very low.)

Does anyone have any encouraging report they can share that would help me believe that a consultation might be worthwhile?

Thanks for reading,

Ken

[Kitt]

Welcome Ken3 Someone will be along.

[agate]

Welcome, Ken3!

Much depends on just how much these symptoms are a problem for you, or at least that's how I see it. Do the symptoms come and go, or are they constant? Are they limiting you in ways that you find difficult?

I like to avoid going to doctors, and if there's a neurological symptom, I try to ask myself if it varies in intensity, and if so, is there something that triggers it? Maybe I'm especially tired when it comes on, maybe I've been doing something with that body part, maybe the symptom comes on only when it's too hot or too cold, etc.

The first question to ask yourself is whether something you're taking (prescription drug, nonprescription drug, supplement) might be causing the symptoms. If you've looked up all of the things you're taking and none of them could possibly be causing them, then you move on to other possible causes. But drugs and even supplements are so often responsible for bringing on strange symptoms that that is where I'd start.

If the problems are plaguing you, depriving you of sleep or otherwise making life difficult, by all means go for the neurological consult.

Did you ask the PCP's opinion--the one who prescribed the nerve conduction study? It sounds as if you were told you could have a neurological consult "if you wanted one" but did the PCP seem strongly in favor of that?

[Jomar]

Explore the useful sticky threads above and try our site search for related posts and info.
You may find something that can help.

[Ken3]

Originally Posted by agate

Welcome, Ken3!

Much depends on just how much these symptoms are a problem for you, or at least that's how I see it. Do the symptoms come and go, or are they constant? Are they limiting you in ways that you find difficult?

Thank you for the welcome (Kitt, too) and your comments! Good questions, and at present I would characterize my symptoms as slightly annoying, but not limiting at all. My concern is that they could progress to the point beyond which they're annoying, and become limiting (e.g., trouble with walking, or sleeping).

I like to avoid going to doctors, and if there's a neurological symptom, I try to ask myself if it varies in intensity, and if so, is there something that triggers it? Maybe I'm especially tired when it comes on, maybe I've been doing something with that body part, maybe the symptom comes on only when it's too hot or too cold, etc.

My symptoms don't seem to vary in intensity, except perhaps they are a bit worse when getting up after sleeping.

The first question to ask yourself is whether something you're taking (prescription drug, nonprescription drug, supplement) might be causing the symptoms. If you've looked up all of the things you're taking and none of them could possibly be causing them, then you move on to other possible causes. But drugs and even supplements are so often responsible for bringing on strange symptoms that that is where I'd start.

I'm not taking any drugs, however I do take quite a few supplements. Since supplements aren't well regulated, even if something I'm taking is seemingly harmless, who knows if what's actually in one of them might be harmful? I did do some hair tests to check for some contaminants (e.g., arsenic), but no positives.

If the problems are plaguing you, depriving you of sleep or otherwise making life difficult, by all means go for the neurological consult.

Did you ask the PCP's opinion--the one who prescribed the nerve conduction study? It sounds as if you were told you could have a neurological consult "if you wanted one" but did the PCP seem strongly in favor of that?

I was waiting to see what kind of opinions I received here before responding to my PCP. But what I wrote was exactly what he said (it was written, so I can't infer anything else from what he wrote). I will ask him what he thinks.

I don't recall making any dietary or supplement changes prior to the initial onset of my symptoms, other than one thing. Which, as far as I've been able to tell, has not been cited as a cause for PN. My entire life, I never drank coffee (well, maybe half a dozen cups throughout my first 60 years). But I did begin to roast and brew coffee about 1.5 years before the first symptoms. But I'd guess that wouldn't be long enough time to create such symptoms, but who knows? But if one 10-ounce cup of coffee daily was enough to cause PN, my gosh this would be a very common disease!

[glenntaj]

. . .it IS a very common disease. Approximately one in fifteen people will experience some degree of peripheral neuropathy in their lifetimes.

There are at least 300 possible causes, including the many hereditary ones--though coffee is not usually listed among them (not that caffeine can't make you jittery, but the EMG results do suggest there is something going on).

I concur with the advice to check out the Useful Websites section here, and one good place to get an idea of the possibilities for cause--and it might be a good idea to get a consult, as some of those causes are harbingers of worse stuff, but, conversely, some are treatable--is the Algorithm for the Evaluation of Peripheral Neuropathy, AKA the Poncelet Protocols:

An Algorithm for the Evaluation of Peripheral Neuropathy | AAFP

And, if you want to get some feedback from online support groups which have people with similar stories, check out the Western Neuropathy Association website at HOME :: Western Neuropathy Association. Full disclosure--I am on the Board of Directors there.

[Ken3]

Originally Posted by glenntaj

. . .it IS a very common disease. Approximately one in fifteen people will experience some degree of peripheral neuropathy in their lifetimes.

That is more common that I thought, but I imagine that number would probably be cut in half if you eliminate those whose cause is diabetes.

Thank you for those links. The diagnostic one was especially interesting, until the flowchart led me to a place where the table was not available (table 2). Nevertheless, that was convincing enough to me that it likely is a good idea to have at least an initial consultation, and see what happens from there.

Thank you for both links, definitely plenty to read there (as well as here).

If I learn anything, or if my symptoms progress, I will update this thread in the future, in case it ever helps anyone else.