I've forwarded all the info to Cathie but I've not heard anything back. Wish I knew what to tell you Dalek. I'm hoping Cathie will come back soon.

Billye

It let me back on after I got some help. Thanks to those of you who took the time to fix me and who also sent me emails and sites to check out...

The burning pain is fired up again-maybe stress has aggravated it. This began right after I had radioactive iodine for a thyroid scan. AlkaSeltzer and ice has helped some. I am a little better today than I was yesterday. Does iodine sometimes do this to PN?

The pneumonia is much better now. I have no bacteria left in my whole body good, bad or otherwise, thanks to the antibiotics.

The surgeon is concerned about how surgery will affect me. Hesuggested waiting 6 months for a repeat Ultrasound. The Endocrinologist and Internist still insist the thyroid has to come out. I don't see myself waiting 6 months. If I had not had childhood radium exposure, I might think about that.

I had hoped I might find someone who could do the least amount of cutting, etc., so the flareup might be at a minimum-don't care about the scar. I did found an out-of-state endocrine surgeon, affiliated with a university, who has done minimally invasive surgery with conscious anesthesia. He also does some type of block, which is supposed to help with pain during recovery. I vascilate between wanting it done here, hoping for the best and then the above option.

Dahlek, early on when I first was diagnosed with PN, I had IVIGG's. Every time bloodwork was run right after the IV's, my autoantibodies would either be considerably reduced or within normal range.

My suggestion on finding an Endocrinologist is to ask other patients who they have seen that they are happy with. Frankly, I would take a good Nurse Practioner over a doc who Uh huhs and Hmmms all through the appointment any day of the week...

Thank you for all of your support,
Cathie

I bet that all was one REAL CHALLENGE! But you made it....

Cathie I'm confused about your bloodwork tho...I've always had mine taken right BEFORE the infusions, so you'd get the closest to 'normal' numbers after the IVIG's worn off. When I'd first started tho, tests were taken every 10 days for the first couple of months to..I think.

My numbers these days are skewed every which way tho due to all the different meds doing different things...and each skews the numbers in different ways. One's calcium depleting, another changes the white and red cell counts, and a third is doing a number on the cholesterol- I'm hoping that dropping one of my meds, will be the result of a new round of tests and who knows what else.

I'll try and sound out some folks I know about area Endo's but for now, I've an appointment in 3 weeks, enuf time to get blood work done and get results to the docs. Times like this the only other time I get to see folks is at different docs...so far, but not Endos-yet.

<<<<< that's how I feel, You?

Super good thoughts in the meantime, I'll keep you updated. - j

PS I just had a PET scan and it was 'radioactive glucose'...is that the same? No side effects really for me tho.

The bloodwork that was done outside of regular labs included autoimmune assays through ImmunoSciences in California. Their panels showed autoantibodies that are not always tested for in regular Rheumatological lab workups, or if they are, I believe they have to be specifically run.

These autoantibodies were usually back within normal range or at least reduced after IVIGG's. I have no idea why the labs were run afterwards and I had so much bloodwork done, I paid no attention to when regular labs were drawn.

I had all kinds of wierd autoantibodies... I am not exactly sure how this all works with Rheumatologists or other doctors interested in looking at these, perhaps MrsD could enlighten us. I would guess there are certain labs like ANA & RA panels that test only for some specific autoantibodies that they look for when they first begin looking for autoimmune diseases.
Cathie

--are some of those autoantiboides the ones that have been discovered that specifically attack peripheral nerves, such as the ones listed here:

http://www.neuro.wustl.edu/neuromusc...oantibody.html

A lot of rheumatologists (and neurologists) are not familiar with the GM, GQ, GD series antibodies, or even sometimes the ant-MAG/anti-sulfatide ones. I've spoken with a few who do test for the different permutations of the anti-nuclear antibody (double stranded, speckled, etc.) but who I had to refer to this and other sites to get them up to speed on the more specific nerve autoantibodies.

Gee, I cannot remember, it has been so long ago, but I am pretty sure I had some of the testing done that relates to autoantibodies involving peripheral nerves. I am not sure, but I believe that was done through the Neurology lab at Barnes in St. Louis. I will have to dig this out of boxes and boxes of records. This is why I have not done Liza Jane's chart. The amount of records/labs is just staggering. I don't even know where to begin.

I cannot imagine trying to condense this. Also, a new Rheumatologist I plan to see asked simply for recent records, which are sure not going to be much help, unless he wants to get in on thyroid removal...

Cathie

That is a good site with all of that testing. My Internist keeps looking for ANCA, maybe because I have vasculitis that was found on a biopsy-finally something no one could argue about...

Did you have any success at getting them to test you for some of these?
Cathie

i'm trying to help cathie get back on...she is having problems again tonight.

I don't know what is going on, but I am having some trouble signing on. Today, it took it... For how long? I don't know... Are my little dog and I banned because she had a tiny accident???

I didn't mean that I just found out I had vasculitis. I kind of misworded that. I knew that from a biopsy quite some time ago. I have so many records, I don't know if if I ever showed this to the old Rheumie or not, but I will show it to the new one. He will have a hard time arguing this-the pathologist dictated nearly a whole page describing it...

Actually, it is called Small Vessel Thrombotic Vasculitis... I know this can be present in some of the autoimmune disorders. Don't have a clue asto whether any supplements over and above what I take now will help.

The report talks about colloid bodies (which are I don't know what) and goes on to say many of the small vessels are filled with blood... Gee, I thought blood vessels were supposed to be filled with blood... I notice on my thyroid biposy, it talks about abundant blood and colloid present in the background. I wonder if I could have vasculitis of the thyroid.

It also talks about extravasation of erythrocytes outside the vessels and some fibrin thrombi, focal fibrinoid necrosis and other stuff I have no clue on. I don't know what any of this means, but "necrosis" does not sound like a very desirable description when describing blood vessels...

I had decided today that I was just going to somehow make myself do the chart, even though it would be mind-boggling. Maybe with this pathology report, and a few of the other significant things I can find, it won't be as important to record so many, just enough to give a general idea...

Anyway, I am going to draft an assistant to help me go through this stuff. Boy, will he be surprised when he gets home... There will be moaning and wailing tonight, for sure...

Cathie