Hi, don't understand what you mean when you said: "Don't waste energy on unnecessary stuff....promise?


What unnecessry stuff am I wasting energy on??

I got all my information I need to get. As a matter of fact, two seconds ago, I got the results of the PM-SCL AB and it was negative.

So for now, we have result from most of the tests.
When the batch he took yesterday, well, when they come in, we'll know more. Until then, he won't have a spinal tap, that much I know.

But I have to go with whatever Dr. Goldfarb feels is in Alan's best interest. She'll confer with Dr. Fred and whatever they come up with, well, they'll come up with.

I'm just curious. Can a person have an auto-immune disorder and it shows up late in life, like in their fifties. And if Alan does have some sort of auto-immune something, why would it get better with exercise, yoga and losing weight. Wouldn't it get worse??

We actually might never know exactly why he has this PN but he's doing fine on the cymbalta and he works out like a demon and he never looked better so believe me, I don't lose sleep over this.

There's so much more going on in my own life (like losing a son to Aspergers disorder), this is the reason I do all the research on the PN. Keeps my mind active and it at least keeps Alan a bit more informed than he would normally be. He actually looks up stuff a bit more now than he ever did.

I believe we all have to be accountable for our own health and our own choices in that health care. I mean, if we are able to. If not, then we rely on loved ones.

Alan and I only have each other. So I'm trying to get him to learn stuff and learn how to do research. Just in case someday I'm not here to make him muffins.

love, Melody

P.S. And get a load of this. My cousin's wife had a complete knee replacement yesterday and they wouldn't put her to sleep. They gave her a spinal (not an epidural either), a spinal. I never knew they still gave spinals. She said she heard the whole operation. I told her. "that's all they would have had me do, be awake during an operation", jeeeeez

Thanks, Dahlek, for your support of the charts. Mel--I think we were worried about you expending a lot of energy investigating whether his insurance would cover IVIG when there were lots of things to be looked at before that point, and when even that is something the doctor would take care of if and when.

If Alan has had the tests for auto-immune disorders that were recommended when his first ANA was positive, and his doctor is doing a very thorough work up now, would you share the results with us?

Alan's pn most seems like the idiopathic type, being stable or improving for many many years, but it does seem he needs a connective tissue disease work-up and autoimmune as on the charts.

If the doctor has done all this, great! Can you share the results with us? Or do you feel it's private. That's okay, too, just let us know that, so we'll all stop bugging you.

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