I thought poly- meant involving more than one kind of nerves (e.g. sensory, motor) but purusing definitions, polyneuropathy occurs when many nerves throughout the body malfunction simultaneously, or a generalized disorder of peripheral nerves, both of which seem pretty broad definitions.

Doc

I believe that one can become very confused with some of the diagnostic
terms used to describe neuropathy! Once some people get a term for their problem, they often never let go of it. This can close doors for future improvements, rather than open them.

Some of them are quite old terms in fact going way back in time.

Then doctors say things to patients sometimes, that are very misleading. We see posters come on NT with some of the comments at times.

I used to hear patients turn in their RX and say: " Dr. told me I have to take this for the rest of my life--why only 3 refills?"
The accurate communication would be, "you may have to have medical management of this condition for life".

So if someone is told by their doctor, that their nerves are "dying" well imagine how slanted that can be taken! Suppose a person has TWO causes for their PN. A spinal injury AND impaired glucose tolerance or a vaccine injury, or toxic exposure?

This board exists primarily to open doors, and not close them.
The peripheral nervous system can heal itself. Even SEVERED nerves can heal up. This is not new information. It exists in textbooks over 30 yrs old. And recently the Brain has been found to also heal itself (which was previously thought to be irreversible to injury).

There are nutrients (some are vitamins/minerals) that enable nerves to heal. Some of us here are dedicated to finding information from medical studies to show benefits in HEALING.
(the exception to this is hereditary neuropathies which have some genetic error as yet not discovered, which prevents normal functions and/or repair of damaged tissue).
Relief of pain is important, but pain relief does not translate into healing for anyone. IVIG and some chemo treatments exist for the dramatic rapidly progressing neuropathies. Some immune suppressing drugs can reduce the inflammatory response that is attacking axons , and then healing can take place.
But the life style changes--control of impaired glucose, and fixing of mitochondria, and enabling myelin repair, can be done by the patient themselves.

Some of our new posters have come here and stated that their neurologist recommended, acetyl carnitine and lipoic acid. This is a start in the right direction, a small start, since there are not many, but it does show that some doctors ARE reading the research and offering this kind of help now.

Doctors remain however out there with the notion that a B12 level of 250 is "normal". And that is a shame. Also Vit D may be tested for but then treated with an RX version D2 which does NOT work. So we see with just these two common nutrients, that medical management fails still today.

I think I was told, at one time, that poly was both sides, and mono was single sided. My memory could be off (affected by over 12 years of neurontin & lyrica) but that's what I think I was told. That doesn't mean that the person who told me wasn't mis-informed on the subject.

No biggie. I wasn't sure myself, and it looks like I was misguided as well, so I looked it up.

I don't think you were in-correct; some of these definitions are so broad that many interpretations would be valid.

Doc

When I was around 5 years old our family drove from NYS to FLA to visit grandparents. When we got into the Deep South, I saw Spanish moss for the first time. My mother made an offhand remark that she hated Spanish moss because, "it kills everything it touches." Being an innocent (believe it or don't! ) naïve 5 year old boy, implicitly believing/trusting his mother (and taking her literally at her word) I was TERRIFIED to get out of the car at the next stop to the point of crying/screaming my head off because I thought if that stuff touched me I was going to DIE.

Having two older siblings, you'd think she'd have known by then that parents have to be careful what they say around impressionable young'unz...

....or maybe they're reading NT....

Doc

"mononeuropathy" just means that one nerve tract is compromised, and "polyneuropathy" means that many are.

By the way, I've seen references to "multiple mononeuropathies", whichmenas that several individual nerve tracts are involved, as opposed to the more "global" dysfunction of "polyneuropathy". This "multiple" term is often used when some condition, often compressive, affects several nerve tracts in different parts of the body, but when the effect is not generalized all around the body.

One can certainly have a "polyneuropathy" but have one side of the body show worse symptoms that the other, or one part show the worst symptoms, but have some effects in other parts.

Ultimately, I don't find these terms very useful. I'm much more interested in whether a neuropathy is sensory or motor, demyelinating or axonal (although obviously they can be mixed), and, of course, what the cause is if that can be found.

The definition on my records is of sensory, axonal, polyneuropathy of a length-dependent, type exhibiting on both sides (L&R feet/legs) of approximate equal nature.
I was told that if it was only one side it would be mononeuropathy.
Old school definition? The neuro was in his 70's.
He also saw that I had been hospitalized for pancreatitis and immediately determined the cause was AN (alcoholic neuropathy) without going any further in investigating other probable causes.
He also was of the opinion that PN in non-diabetics, was usually caused by...... pre-diabetes, when no other causal factor could be proven.

Now I understand why I didn't suffer any appreciable withdrawal when I titrated off maximum dose of Lyrica with my already maximun dose of Neurontin. I am at therapeutic levels of Neurontin only now.
Your theory is sound.
Thanks,
RX

I was on gaba at 2400 mg/d (4x600 mg doses), then switched to Lyrica at 300 mg/day (2x150 mg doses). I found that Lyrica has a half life that tapers off quickly to the point where it is ineffective well before the next dose. I therefore use one gaba to 'fill in' when I start to get very uncomfortable, and it seems to work.

I asked my pain doc about this and he told me to quit what I was doing (I didn't - sometimes a well informed patient is the best judge in such matters). I think it comes down to how often you mix the meds and what the dosages are.

Before I was taking gaba or Neurontin for many years. Then, as most have discovered, the drug's effectiveness diminished rather quickly, hence the titrating up. However, if you can handle occasionally not using these drugs for 1-3 weeks, much if not most of the durgs' original effectiveness returns. I know this creates a roller coaster but for some it may be well worth it.

Lortab is another example of where getting off of it for a while occasionally will restore the original effectiveness. It will save you from changing to stronger opoids.

Mark

there is a poster Brian on here from time to time who used to titrate down and then back up again on medication for PN when he had become too tolerant of it even at large doses. it worked for him.