--the previous test results that you posted did include a lot of the standard tests for autoimmune diseases that area vasculitic in nature--that is, that involve the blood vessels and most often some version of the anti-nuclear antibody (ANA)--and apparently none of those came up.

The more recent tests--the SPEP, immunoglobulins--are autoimmune tests, but not vasculitic ANA ones. These are to see if Alan's bone marrow is producing any rogue antibodies of a monoclonal or polyclonal kind; these can cross-react with nerve tissue and cause neuroapthy. The monoclonal kind are more ominous; they are often associated with blood cancers, although two thirds of people with monoclonal antibodies have no evidence of such--then the condition is termed monoclonal gammopathy of undetermined significance (MGUS). This condition is somewhat more prevalent as people age--about 1% of people over 50 have some sort monocolonal antibody. And a lot of people with MGUS have an associated neuropathy.

Take a look at these:

http://www.neuro.wustl.edu/neuromusc...y/mprotein.htm

http://www.neuropathymd.org/topical/...Gammopathy.pdf

(Second one is written by Dr. Latov.)

I have confidence in Dr. Goldfarb after my talk with her, and I can always help monitor this through Methodist, if you'd like (my friend Dr. Salgado is her colleague, and of course I mentioned you two in my conversation with her). We all want to make sure Alan continues to be able to body-build.

My dear Glen:

You have my utmost gratitude to monitor away on anything you care to monitor away on. You can talk, look at his files, do any little thing your heart desires.

I read what you just posted and if you think I understood one word, well, forget it. I should have become a nurse (like my mom did at the age of 55) but unfortunately I didn't).

So consult, monitor, do any little thing you get any chance to do.

I trust Dr. Goldfarb and of course I trust anybody on these boards.

So, when we get the results of the latest gammablobin (or whatever the heck those things were yesterday), I shall post. Believe me, I shall post.

Oh, Alan came home from his latest yoga class.

He said "I'm a flamingo and a warrior".

I said "I always knew there was something I liked about you".

Then he started flexing his muscles and he lost me!!!

Had to go cook!!!!

will update.

love ya

Melody

I am not surprised to hear that the vasculitic titers were negative. Such a condition seems to go against the clinical data, in that Alan's PN appears to have developed slowly. The vasuclitic conditions that cause PN all seem to be aggressive. I am not aware of any that are insidious. Do such creatures exist?

rafi

Hi there Rfinney:

Can you please translate what you just wrote into english for me. Tonight I'm not thinking like I can understand stuff.

I'm just tired from all this research.
Thanks much.

Melody

--it is possible for the onset of such neuropathies to be gradual, but you're right, rfinney, most often the onset is acute to sub-acute, and progresses relatively quickly.

There seems to be a bit of an age division here; those who are older, or who have ANA titers that are not as elevated, seem to show more likelihood of a slower, chronic development of symptoms. And, the different vasculitic conditions have variable patterns--neuropathy secondary to lupus or polyarteritis nodosa tends to come on quickly and aggressively, whereas that of Wegener's Granulomatosis or peripheral nerve specific vasculitis often comes on more gradually.

See:

http://www.neuro.wustl.edu/neuromusc...tml#vasculitis

Nevertheless, I agree that the patten that is described for Alan doesn't seem much like a vasculitic type neuropathy, and, of course, none of the recent testing for ANA-related conditions has panned out. It will be interesting to see of the immunoglobulin /protein studies show anything.

I love it when you guys talk dirty!!!!!



lol

I have absolutely no idea what you are saying (with ana titers, etc. etc.)

To put it simply... Do you think Alan's PN is auto-immune, or do you think it's from his spinal stenosis (remember, after Dr. Theirl's adjustments, he's a completely different person.


mel

--is that it may be autoimmune, but not ANA autoimmune, and given Alan's general level of health now, and the long period of time he's had symptoms, it's probably not due to a monoclonal autoimmunity (gammopathy) either. He may have one of those persistent "idiopathic" neuropathies for which autoimmune mechanisms are suspected, but no known antibodies are found. (As Dr. Latov says, they are likely to one day be discovered--then neuropathies associated with them will no longer be classified idiopathic.)

Dr. Goldfarb may want to test him for some of the known antibodies specific to peripheral nerve, such as anti-MAG, or anti-sulfatide, if the other tests don't show anything amiss.

It's possible it's due to spinal issues--actually, more likely due to compression on nerve roots in the lumbosacral/cauda equina area--but this may not show up definitively, either.

The old standby causes are impaired glucose tolerance--it's now know that can cause neuropathy well before a frank diabetes diagnosis--or some sort of toxic or infectious exposure, but if the latter factors caused it initially, it may be impossible to find those agents now.