Hello,

I have been dx'd with small fiber sensory neuropathy. You may remember some of my past posts. The initial nerve conduction test showed that I had axonal damage...not myelin sheath.

Given this dx, what are my chances of recovery? Can axonal damage be reversed? I think the answer is no, but I want to be sure. I am currently taking a slew of vitamins/supplements are recommended by people here. I also take Nuerontin (900 mgs a day). I have stopped taking the Topamax.

My goal is to eat better, exercise more and eventually go off all prescriptions. I want to heal my body, not put more chemicals in it. Is this possible? Has anyone gotten better with the diagnosis? All the major culprits in causing the PN have been ruled out.

Thanks

Ann

The process is very slow, though, somewhat patchy, and, depedning on cause, may not be complete. In fact, much of the clinical opinion regarding axon degeneration indicates that if the offender is removed, one can get "slow, partial recovery".

The reason is that once fibers themselves have died, nerve regrowth is unlikely to be in the same pattern; axonal growth cones do not always re-establish the pathways that were there before the damage. (They can, however, establish others.) And, depending on age, nutritional status, the degree to which the orginating condition is ameliorated, one may get regrowth to greater or lesser degrees. And it is likely to be slow. Under the best of conditions, axonal regrowth may proceeed at a millimeter a day. Extrapolate, and for the longer fibers that extend, say, from the dorsal root ganglia to the toes, one may be talking years.

But that is not to say it's impossible. In my case, successive skin biopsies have shown a slow but steady re-enervation since my acute-onset body wide burning small-fiber neuropathy struck in April 2003 (in fact, today is the five-year anniversary for me from first symptom; no cause has ever been definitively found, but an autoimmmune molecular mimicry process is suspected); it's unlikely I'll ever get back to "normal" levels of intraepidermal nerve fiber density, though. My symptoms, however, are greatly reduced.

On this board, a few can tell similar stories--especially those whose neuropathies seem to have had specific identifiable causes, such as diabetes, chemotherapy or vitamin deficiency; when the generating condition was controlled or removed, recovery became possible.

Glenn,

This may sound like a dumb question. But I am curious. The Vitamin B12 post yesterday prompted me to pull out the test results done by my own Neuro and and then those of Athena Diagnostics. I never had the Athena results in my hands until just recently. Anyway, there is NOTHING axonal. So, could you explain the difference between the Axonal vs. Myelin damage? Thanks! Oh, and none of those reports listed any kind of damage; just the tests they had done and/or the Immunoassays...everything was normal.

It requires B6 and folate + essential fatty acids. All of these are needed for
repair.

This is explained in Craig Cooney's book:
http://www.amazon.com/Methyl-Magic-M...8092464&sr=8-1
Methyl Magic
There is a whole chapter on this subject there.

Hi.

You wrote:

"My goal is to eat better, exercise more and eventually go off all prescriptions. I want to heal my body, not put more chemicals in it. Is this possible? Has anyone gotten better with the diagnosis? All the major culprits in causing the PN have been ruled out."

You sound exactly like me. I DO have a diagnosis, however. Diabetic Neuropathy. I've been diabetic for 20 years. But I came on these boards, I read, I listened, and most definitely cleaned up my act regarding over-eating.

And I listened to all the info on B-12 and other supplements (especially magnesium). In my case, the burning was greatly reduced. (because f the Methyl B-12). Doesn't happen to everybody, but I got lucky.

I'm also 60 years old. But I don't want to be 60 years old.

I want to be 30 years old again. So in my mind I'm 30.

Right now as I type this, I'm coming down from being completely bent over because of my arthritis. This only happens when the weather is nuts and for two days it has gone from 75 to 40, back to 70, down to 30.

So my poor back doesn't know what to do.

So I used the Therma wrap thing that when you open it, the air activates the iron charcoal thingees in the wrap and you just wrap it around your waist and you have heat for 8 hours.

Best thing I ever did.

At least it allows me to function until I can straighten out again.

Pain pills did nothing for me. Movement does, but who can move when you are bent over??

So I just wait, do mild stretching and try to laugh until the sun comes out again and I'll straighten up. This has happened more times than I can remember but there are good days in between. I especially love July and August. I'm straight as an arrow in those months.

So you continue to take your supplements, don't over eat. Make sure your sugar is good. (you are not a diabetic from what I have read).

And try and think positive.

Stress is a killer, believe me.

Glad the neurontin is helping. Some people can't take it. My husband has had neuropathy for 18 years. Neurontin made him deathly ill.

When a person tolerates it, it does the trick. I have heard this from people on these boards.

So I wish you well on your journey to fight this condition known as NEUROPATHY.

May we all, someday, be pain free.

Take care,

Melody

Nerves surely can regenerate when they are in the right environment, it is a very slow recovery though.
Numb areas does not always mean the nerves are completely dead, the soles of my feet were very numb, but over time i have regained a lot of feeling back in them and they are still continuing to recover in some small patches.
I am lucky enough to be able to live a normal life again, my PN doesn't affect me at all these days.
As far medication goes, i continued to use my pain relief as long as i needed to, then when i was ready, i stopped taken my Tramadol and haven't taken one since, i don't think it hindered my recovery but that's completely up to the individual, i believe it's about quality of life though.
Finding the cause is the biggest hurdle to jump.
good luck
Brian

--that is, damage to the very thin nerves that subsume the sensations of pain and temperature, is by definition axonal. These fibers have no myelin sheaths (or, at the very most, a very thin, tiny one, without the layers of fatty substance that surround the larger sensory and motor nerves).

The larger, myelinated sensory nerves deal with vibration, positional sense, and mechanical touch. All motor nerves are myelinated.

So, one can have a neuropathy that is primarily demyelinating--something attacks the myelin sheathing (autoantibodies, toxins) or does not allow it to be properly regenerating (deficiencies)--and this results in garbling and slowing of nerve signal transmission. (Myelin not only acts as a nerve protection, but as a signal regulator/amplifier.) One can have a large variety of symptoms from this, sensory and motor. On the other hand, one can have a neuropathy that is primarily axonal--the attack is to the nerve fiber, the axon, itself. These can also be autoimmune, toxic, deficiency based--and also ischemic/vascular (as in diabetes).

Of course, one can have mixed types--attack on both myelin and axon simultaneously. One can also have a primarily demyelinating neuropathy with secondary axonal damage, when the axons are uncovered by damage to myelin, or a primarily axonal neuropathy with secondary damage to myelin as the axons deteriorate.

The Washington University Neuromuscular website explain this quite well (and has a LOT of info about potential causes):

http://neuromuscular.wustl.edu/nother/myelin.html

http://neuromuscular.wustl.edu/antibody/pnimax.html


With myelinated nerves that are damaged, EMG/nerve conduction studies tend to produce fairly characteristic patterns of abnormality, depending on whether the damage is axonal or demyelinating:

http://neuromuscular.wustl.edu/lab/patterns2.htm

Kathi, exactly what do your lab results say?

Thanks Glenn!

Okay, here goes...I have 3 pages here:

Test: Small Fiber Painful Axonal Profile

This individual does not possess abnormally elevated levels of either Sulfatide 4 or Hu 2,4 autoantibodies. Therefore, the likelihood that this individual's neurological systems are associated with Familial Amyloidotic Polyneuropathy (FAP) type 1 or an autoimmune response to either the Sulfatid glycolipid or the HU antigen has been reduced.

Results:

Sulfatide ELISA IgM Titer - 0
Sulfatide ELISA IgG Titer - 0
Hu Immunoreactivity - Negative

There is a whole lot more on these 3 pages. But basically nothing evalated and all normal.

Then I have SOME tests that my Neurologist did but these are NOT the results...just SOME of the tests. I know there were more and I need to get ALL the copies. So, what I have so far is:

Angiotensin 1 Enzyme
Sjogren's Antibodies
RPR (don't know what that means)
HGB, Glycated
Protein
Protein, Electro
T-3 Resin Uptake
Thyroxine
TSH
Vitamin B12

And the following is just a billing from Athena:

Immunoassy
Molecule Isolate Nuclei
Molecule Nuclei Ampli
Molecule Mutation Identify
Genetic Examination

Whew, then there are the results from the Rheumatologist which basically ALSO says everything is normal and "no evidence of connective tissue disease."

Anyway, after this was all said and done she told me everything was normal and if I remember correctly my B12 was above 700. And I just recently had my Vitamin D checked. It is fine as well.

At my next visit I will make sure I get listing and results of ALL tests. This was done about 3 years ago so I know I have either misplaced some things OR I just failed to get copies...probably the latter. I know if something had been wrong or '"off" she would have said something. Oops and the QSART showed very minimal damage. So small she said it almost didn't show up. So, who knows...it is possible I might have thought I felt something or not and pushed a button at the wrong time.

Sooo...to make a long story short I think the "burning" sensations I had all along and ONLY came on after surgery have to do with a compression form of neuropathy and not necessarily any deficiencies or anything autoimmune. Oh, and I am not diabetic either. And I also think this is why she changed the PN diagnosis to Central Pain Syndrome which makes more sense to me in my OWN situation and based on everything I have read about it. It all seems to me to be spinal related. And she was in full agreement ONCE SHE KNEW my HISTORY PRIOR to any fusions. The pain just went on for far too long until I found an NS that was willing to do something about it.

But thank you for the explanation; it was very informative.

Darn it, lol, forgot to add...EVERY EMG I have ever had done comes back normal. The only exception was over the summer which showed slight carpal tunnel in my right arm.

--that you're showing up negative/normal for some of the nastier causes of peripheral nerve damage (such as autoimmune cross-reactivity due to neoplasm).

It is very difficult, when one keeps coming up negative/normal on these tests, to determine if one has an idiopathic small-fiber syndrome, or if one has some degree of central sensitization of central pain. Most cases of central pain do originate from some form of identifiable "smoking gun"--stroke, MS, combined subacute degeneration due to B12 deficiency--but it's certainly true there can be trophic changes to spinal neurons, especially in the spinothalamic, that can be very hard to detect. The chemistry of these reactions has become better known (interactions with Substance P, particularly), but try sampling that is spinal neurons without subjecting a patient to massive potential complications . . .

One of the neuros I've corresponded with at Hopkins about ganglioneuropathy (cell damage in the dorsal root ganglia) said, with typical neurologist humor, that finding such damage, or other trophic changes, awaits either better imaging techniques--or our autopsies, and I imagine that's true with a lot of Central Pain patients, too.

Thanks Glenn,

EXACTLY! You pretty much stated what my Neurologist did the other day. I DID ask her WHY she did NOT do a spinal tap, skin biopsy or nerve biopsy. She kind of laughed and asked, "Do you want them?" Well, that stopped me in my tracks and I said, "No, come to think of it I don't!" Anyway, yes, I firmly believe my neck; cervicogenic headaches, ON and the ongoing SEVERE pain for 3 years is what did me in. That and a slew of medications. The first NS I saw did NOT want to any surgery until I showed deficits in my arms. He was wrong! The pain was going up the back of my head. When the second NS saw the state of the C3/C4 he was the one that said surgery ASAP! And his exact words were, "Too much pain for far too long!"

Oops, almost forgot. She said the same thing you did...to subject me to a spinal tap and the other tests could cause complications.

Anyway, let me backtrack a bit. I only met up with my current Neurologist AFTER the first fusion. She had no idea what had gone on before. I thought she had the records but evidently she didn't. So, I spent about an hour with her going through everything that had happened and everything the original PM's tried to do to help me. So, immediately she said...you have Central Pain Syndrome. Or, it could be Central Sensitization. I am just relaying what she said. Plus, the fact that ever test I have done comes back normal. And from what I have gleaned from various websites about it...fits me to a "T"! Except for the fact I don't think I have it nearly as bad as some. My PM is in agreement with her now as well. He doesn't like a diagnosis of Fibro because I thought about that at one time. But he definitely believes in Central Pain and explained his own reasonings.

So, yep, I think the cervical spine WAS the smoking gun.