I thought I did share the blood results with you.

Didn't I post some time ago, when I said "Alan's bloodwork came back".
So far, that's the only stuff I have. Now yesterday, he went for more stuff, like I said. They took blood for QUANTITIVE IMMUNGLOBULINS, SPEP,IFE, and other things (I can't read her handwriting). Maybe one of them was vasculitic autoimunne markers. I have no idea. Do any of these tests have anything to do with auto-immune stuff?

Alan had these blood tests at the end of December. Here are the results again. Dr. Goldfarb ordered these tests. We had gone in and I showed her Liza Jane's Charts and she looked at them and said "oh I know all about these kind of tests, see??? I have my own PN specific tests that I'm ordering so don't worry, I am going to be very thorough!!!".

So here again, is the results of the tests he took in December.

Glucose Tolerance One Hour test - 137 Reference is 70-200

His regular blood test page (the one with CBC and TSH and T4. Free, T3, Total Ferritin, the whole page was fine. Nothing kicked out as abnormal.

His Cryoglobulen,QL W?Rx Cryoglobuin, QL - Negative

His COMP METAB PANEL W/EGFR GLUCOSE - 82

His TIBC was 221 Reference is 250 – 400


FOLATE, SERUM ……15.7 Reference Range >5 .4 ng/mL

PSA, TOTAL …….2.16


ANA SCREEN, EIA W/REFL IFA
ANTI-NUCLEAR AB ……………Negative

TISSUE TRANSGLUTAM AB IGA…..<3 Reference Range <5 U/mL
Interpretation : Negative (I gather this means no celiac disease)

ANCA VASCULITIDES
MYELOPEROXIDASE AB <6 Reference Range <6 U/mL
Interpretation: Negative

PROTEINASE – 3 AB <6 Reference Range <6 U/mL
Interpretation: Negative

SJOGRENS SSA
SS-A AB <or=1.00 Reference Range <or=1.00 INDEX
Interpretation Negative Negative
Antibodies to SSA (RO) and SSB (LA) are
Observed with the highest frequency in
Sjogren’s syndrome, although these
Antibodies are also found in a significant
Percentage of patients with SLE.





SJOGRENS SSB
SS-B AB … .<or=1.00 Reference Range <or=1.00 INDEX
Interpretation - negative Negative

Antibodies to SSA (RO) and SSB (LA) are
Observed with the highest frequency in
Sjogren’s syndrome, although these
Antibodies are also found in a significant
Percentage of patients with SLE.


RHEUMATOID FACTOR <7 Reference Range <14 IU/mL
(Dr said that he does not have Rheumatoid Arthritis)


C-REACTIVE PROTEIN 2.3 H Ref Range <0.8 mg/dL
SM, AB, EIA ……..…NEGATIVE

RPR W/TITER & CONF RFX
RPR SCREEN - Nonreactive

LYME DISEASE IGG, IGM, WB
LYME DISEASE IGG, WB
LYME DISEASE INTERP (IGG) …..NEGATIVE

18 KD (IGG) BAND Nonreactive
23 KD (IGG) BAND Nonreactive
28 KD (IGG) BAND Nonreactive
30 KD (IGG) BAND Nonreactive
39 KD (IGG) BAND Nonreactive
41 KD (IGG) BAND Reactive
45 KD (IGG) BAND Nonreactive
58 KD (IGG) BAND Nonreactive
66 KD (IGG) BAND Reactive
93 KD (IGG) BAND Nonreactive

IgG Western Blots which have 5 (or more) of the 10
Significant bands are considered positive for specific
Antibody to B. burgdorferi. (Proceedings of the 2nd Conf. On
Lyme Disease, Dearborn, MI 1994.)

LYME DISEASE (IGM). WB
LYME DISESE INTERP (IGM) Negative

23 KD (IGM) BAND Nonreactive
39 KD (IGM) BAND Nonreactive
41 KD (IGM) BAND Nonreactive

IgM Western Blots which have 2 (or more) of the 3
Significant bands re considered positive for specific
Antibody to B. burgdorferi. (Proceeding of the 2nd Conf. On
Lyme Disease, Dearborn MI. 1994.)

DNA (DS) ABS <30 Negative

ANGIOTENSIN CONV ENZYME 52
PM – SCL AB see note Negative
PRELIMINARY REPORT -
This test is delayed because reagents re unavailable from the manufacturer.
Results are expected by 12-28-06. This test was developed and its performance
Characteristics determined by Quest Diagnostics Nichols Institute. It has not
Been cleared or approved by the U.S. FOOD AND DRUG Administration. The
FDA has determined that such clearance or approval is not necessary.
Performance characteristics refer to the analytical performance of the test.

Test performed by:
Quest Diagnostics Nichols Institute
33608 Ortega Highway
San Juan Capistrano, California 92690

End of Report
----------------------------------------------------------------------

Now today, I got the last test that was not included in this one, the PM – SCL AB. I got Quest Diagnostic to fax it to Dr. Fred's office and they just told me it was negative.

SO NOW, we have to wait for the results of the blood tests he took yesterday. Now I have no idea if these are more auto-immune or whateve they are but when I spoke to Dr. Goldfarb a few days ago, that's when she said "Melody, I want Alan to get a lumbar puncture, that will tell me a great deal.". So who am I to tell her "no, he's not getting a lumbar puncture, especially if they can do it while he's having his foot surgery (we find out more about this on Thursday).

And don't be concerned one bit about invading my privacy or me not letting you guys in on any test results. As soon as I get test results, I post them here immediately. I've always done that.

See how I titled this thread. I had just gotten the emg results.
I rely on you guys a lot for your wisdom and knowledge.

Is there any more tests that she is supposed to order for him. I gave her the Liza Jane charts and she seemed to understand and she had her own charts and she is a PN specialist. Honestly, I don't know what else to do.

I mean Dr. Goldfarb seems to know what she's doing. I guess she's being as thorough as she can and I think she ordering the blood tests that she knows his insurance will pay for. Anything else, well, we can't afford anything else.

And I'm not worried about any ivig because I found out in an e-mail that his insurance will pay for it.

I'm the kind of person, who, if you have a problem or need to know something, just call me up and I'll get you an answer in 30 seconds from the internet or from a phone call. It's just the way I am.

I'll give you an example. My siser in law loves Dreamgirls. and she loves the way Bianca Ryan sang the song "And I'm telling you I'm not going" . This 11 year old won the one million dollar prize from the America's Got Talent tv show.

BUT.... my sister in law never saw Jennifer Holiday sing it on broadway and that was in 1980. I simply went to youtube.com, found Jennifer Holiday singing it on stage, e-mailed it to my sister in law (took me all of 30 seconds to do this) and she was the happiest sister-in law you ever saw.

I also emailed her videos of her favorites from the Phantom of the Opera, etc. She never knew you can go to YouTube.com and see absolutely anything that was on a musical stage, on a tv show, absolutely anything. She went nuts. She is now watching everything she never saw and it's all on the internet.

So to me research is what I do and to me it's no energy whatsoever. It keeps me from thinking about my son and I'm just better for it

So feel free to ask me any questions about anything. I'm not a private person. You can't have my kind of personality and be a private person. I'm an open book.

So if you think I should ask Dr. Goldfarb if there are more tests, well I'll just run that by her. But I don't want to make a pest out of self with this doctor. She's the most thorough Doctor we've had so far as far as PN goes.

So as soon as I get the results from yesterday's QUANTITIVE IMMUNGLOBULINS, SPEP,IFE, I shall update everybody.

But until then, if you want to find anything about any tv show, movie, or musical just private message me and you'll have it in 30 seconds, guaranteed.

Melody

--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.

Melody,

I agree with Glenn's speculations. Basically, many docs and folks like us on this board think that many, if not most, "idiopathic" neuropathies are very likely to be autoimmune in origin and that down the road the specific antibodies will be identified. There could be quite a few, actually.

In Alan's case, we are saying that his clinical features do not suggest a vasculitic neuropathy, that is, a neuropathy triggered by a circulation disorder. Glenn does point out that there are some vasculitic conditions that develop gradually but there does not seem to be any other evidence that suggests he has such a condition.

In the past few years, I think most practitioners, at least those at the forefront, who diagnose and/or treat neuropathy have come to the conclusion that impaired glucose tolerance, which is now "officially" recognized as a condition in its own right, can trigger neuropathy. I think many are considering the possibility that a significant number of "idiopathics" could fall into this category. So between the two - autoimmune and impaired glucose tolerance - we may eventually see the number of "idiopathics" fall dramatically.

rafi

Let's say the 3 hour glucose tolerance test comes back and they find out that it shows he has impaired glucose tolerance. Now what the heck does this mean and what do we do about it.

His sugar readings are around 84 (I know he's not a diabetic). But this impaired glucose tolerance is different from being a diabetic right?

So if it is found out that he has this neuropathy because he had impaired glucose tolerance, what do we do about it?

Does IVIG help this?

DOES ANYTHING HELP THIS?? I mean the only time he gets relief (sometimes the cymbalta works and sometimes it doesn't), is well he exercises and now he is doing yoga. This man is almost 60. He can't be doing what he's doing for the rest of his life. He'll bend himself into a pretzel and one day, he won't be able to get up off the floor.

So is there no relief for someone who is not a diabetic but it turns out they have impaired glucose tolerance (am I even phrasing this correctly).

He's going to want to get some answers eventually. I mean, to have all these tests, blood, (possible spinal taps), mri's , etc.etc, then be told "well, we think you might have impaired glucose tolerance (believe me, Alan never even heard of this), I'm just curious if there might be some answers.

Believe me, I know that many of you on these boards have a much much worse of PN than my Alan. I know this and my heart goes out to you.

I'm just trying to be like a pioneer in trying to find some answers that might SOMEDAY help anybody who has PN.

His neuro studied under Dr. Lantov who is somewhat of a pioneer in IVIG and neuropathyies and cells, (I'm not putting this right) but you understand.

We baby boomers are getting older and if someone soon doesn't open up and start some real research into the causes of the various neuropathies, well, what's going to happen to us as we hit our 70's and 80's.???

I mean, they can keep us alive with the Plavix, and antibiotics, and heart meds, and blood pressure pills, but if you have PN, you really want to take a hammer and bang yourself sometimes. This hasn't affected me thank god, but I will never forget the nights when Alan would jump off the bed at 1 oclock in the morning screaming his head off and I had to slap another fentanyl pain patch on him (and I wasn't supposed to slap any more patches on him) but he was in such pain in between the toes) and also it seems there was a really long scratch on the top of his foot (we could barely see it, he must have scratched his foot with the nail of his other foot) but it affected the neuropathy and he went out of his mind. This was before Dr. Theirl. I did not know what to do. He was going nuts so I ran into the other room where we had the patches and I found a 25 patch and just slapped it on his back. That brought him to 125 of the fentanyl. He just went "oooh, thank god". It worked immediately. He said "my foot was on fire". I put cold compresses on his foot and by the time the second patch wore off, the coolness of he compresses did some good. I mean, that night I got a real lesson in what PN is all about and how it can affect you painwise.

I mean, there has to be more than opiates to be the answer to this. Know what I mean?????

Mel