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Initial Tests Ordered For Me By Dr. Goodman

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After I talked to Dr. Goodman, these were the tests he ordered for me

For lab: 24 hr urine sodium


-am cortisol

- 25 hydroxy cut d2 d3

- alt

- anca panel

- angiotensin converting enzyme

- antinuclear ab

- ast

- vit b 12

- calcium

- cbc

- copper

- creatinine

- electrolyte panel

- extractable nuclear antigen antibody with ena panel

- folate

- ferretin

- glutamic acid

- gliadin antibodies

- glucose

- hemoglobin 1ac

- lactate plasma

- paraneoplastic autoantibody evaluation

- pyruvic acid

- sedimentation rate

- tsh

- tissue transglutaminase ab iga

- tryptase

- catecholamine fract ortho endo

And for diagnostic tests:

- emg

- holter monitor

- autonomic reflex screen ( look up to get info on it)

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So far, none of us here have been able to get Dr. Goodman on board with our ideas of angiotension 2 or Ace2 autoantibodies. I'm hoping that lemons is going to succeed where a whole bunch of us haven't been able to. Then, if she does - I guess I'll be making another appointment. LOL

You go girl, we're pulling for you!


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What he told me was that some facilities (which will remain un-named :ph34r: ) have produced research which isn't able to be replicated at other facilities so therefore he takes it all with a grain of salt. He did tell me, when I saw him a few weeks ago, that he would at least look into it (but was kind of rolling his eyes when he said it). Maybe if we all gang up on him, he'll really look at it! :rolleyes:

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I brought up angiotensin ii and he smirked at me. And noted that he was aware of ideas about this. He did not say this but my interpretation is that it is not clinically significant, I.e. even if they were off, it has not been studied enough to reveal remarkable information for guiding treatment.

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It could be very significant - as could the possiblity of autoantiboidies to ACE2 for those of us with EDS and autoimmune problems. We just haven't given him the right study to convince him yet. What we say here is of little importance. He's only going to go on what studies have been scientifically done. Anything less and he won't consider it.

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I don't even want to count how much they got from me. I've done the gammut there 3 times. The first time I was there over 3 1/2 weeks. The second time 1 1/2 and this last time - whew, I finally live here and now I run back and forth. When you live here they spread it all out and it's not the mad rush to the finish line. But, I kind of liked having it more concentrated. Although, it's very tiring and crazy - you get your results faster.

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I had 10 tubes and 6 syringes of blood taken... OMG, I was weak for days. I was pale as a ghost and OF COURSE started my period the next day. I couldn't even sit for 2 days without sycnope- luckily was inpatient at Mayo- but Issie is right NO messing around!!!!!

But you should finally receive some answers... Just make sure you write down any questions to follow up with... I don't know how it is in AZ but I know it's difficult to to get MY personal neuro doctor in Rohester. I left with too many questions......and then I went into acute inpatient rehab. They helped very litte because they kno nothing the condition. They did labs to check and my ferritin numbers - they were a 7 or 8- typically low for me. The new numbers were over 70-something. The doctors rehab thought this was great- but did not share lab results Mayo was agreed upon. I had 2 infusions- during the second I started haing having an anaphylactic reaction, when I finally contacted my Mayo dr. He ordered and my body was in full rejection. When i told him the Ferritin level he got very upset because I'd had 2 more infusions after the fact that is the ONLY good thing tamar came of it was my iron Ferritin went way up (he didn't order that one- just basic CBC) avid he asked me to wait 20 min, and he'd b right back. Well, apparently that's one sign of rejection but THEN

Who would spect rehab drs/therapist I know that? That's why ALL tests go to Mayo. He would have stopped it immediately- and I probably wouldn't have to wait so long and bo sick just to get it out of system. Ugh.


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What he told me was that some facilities (which will remain un-named :ph34r: ) have produced research which isn't able to be replicated at other facilities so therefore he takes it all with a grain of salt.

Although they (v) werent the first to find an association between angiotensin II and POTS - Julian Stewart and Marvin Medows did. And ofcourse the autoantibody Mayo have associated with POTS can only be tested for at Mayo which seems ironic.

Ang II may have extreme relevance ofcourse - being the strongest lead that has come out of the research in the last 4 years or so and being one of the few findings that HAS been replicated by more than one research group. But true, its just a research lead, not at this stage a marker that directs treatments (other than experimental use of ARBs in a few POTSies ive spoken to, some with success).

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The blood draw did kind of get me today. It was a lot! I thought they were going to lose me half way through, but i stuck it out moved slowly, and ate a banana literally on my way out of the room. All day i have been pretty light headed though, really tired, and exceptionally thirsty.

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Some of that thirst may potentially be related to going to a dry climate from the Seattle area. A lot of people who come down to the desert areas note that as a problem.

Hope tomorrow goes well for you. Do you meet with him again to get your results tomorrow?

Rama- YOU know that and I know that but...... :P

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