Lemons2lemonade Posted February 15, 2012 Report Share Posted February 15, 2012 After I talked to Dr. Goodman, these were the tests he ordered for meFor lab: 24 hr urine sodiumBloodwork: -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 endoAnd for diagnostic tests:- emg- holter monitor- autonomic reflex screen ( look up to get info on it) Quote Link to comment Share on other sites More sharing options...
issie Posted February 15, 2012 Report Share Posted February 15, 2012 Yeah, They don't mess around. Thank goodness your insurance pulled through - it's horribly expensive. But, you sure do get everything when you get going. Is he going to do the catacholomine test - that I told you about.? Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 15, 2012 Author Report Share Posted February 15, 2012 I think that is the ortho endo one not sure Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 15, 2012 Report Share Posted February 15, 2012 wow that is pretty comprehensive. No Ang II or does the ACE mean ACE2? Quote Link to comment Share on other sites More sharing options...
issie Posted February 15, 2012 Report Share Posted February 15, 2012 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. LOLYou go girl, we're pulling for you!Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 15, 2012 Report Share Posted February 15, 2012 That's great! He did a very similar work up for me a month ago. Good luck issie, did he say why he doesn't support the ang 2 thing? Quote Link to comment Share on other sites More sharing options...
issie Posted February 16, 2012 Report Share Posted February 16, 2012 He doesn't say he doesn't support it - he just won't address it. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 16, 2012 Report Share Posted February 16, 2012 What he told me was that some facilities (which will remain un-named ) 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! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 16, 2012 Report Share Posted February 16, 2012 Oh gotcha. All the different pots docs seem to be pretty rigid on their theories, which I can understand Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 16, 2012 Author Report Share Posted February 16, 2012 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. Quote Link to comment Share on other sites More sharing options...
issie Posted February 16, 2012 Report Share Posted February 16, 2012 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. Quote Link to comment Share on other sites More sharing options...
jangle Posted February 16, 2012 Report Share Posted February 16, 2012 Make sure there's still blood left in the tank after all that. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 16, 2012 Report Share Posted February 16, 2012 Lol Jangle! They took 12 huge vials from me, I swear they drained me dry! Quote Link to comment Share on other sites More sharing options...
issie Posted February 16, 2012 Report Share Posted February 16, 2012 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. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 16, 2012 Report Share Posted February 16, 2012 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. Jen Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 17, 2012 Report Share Posted February 17, 2012 What he told me was that some facilities (which will remain un-named ) 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). Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 17, 2012 Author Report Share Posted February 17, 2012 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. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 17, 2012 Report Share Posted February 17, 2012 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...... Quote Link to comment Share on other sites More sharing options...
issie Posted February 17, 2012 Report Share Posted February 17, 2012 It's really pretty dry here, right now -make sure you keep hydrated. Hope today brings you some news. Do they have you running tomorrow?Issie Quote Link to comment Share on other sites More sharing options...
issie Posted February 17, 2012 Report Share Posted February 17, 2012 Rama- YOU know that and I know that but...... Yeah, all of us that have tried to get Dr. G to address this - KNOW. But so far, none of us have been successful . . . .yet. We got Lemons on the case now though. LOL Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 17, 2012 Report Share Posted February 17, 2012 We got Lemons on the case now though. LOL And after what she has proven she can do with the insurance company Dr. G should be shaking in his shoes. LOL Quote Link to comment Share on other sites More sharing options...
issie Posted February 17, 2012 Report Share Posted February 17, 2012 You're not kidding!GO - LEMONS - GO! Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 17, 2012 Author Report Share Posted February 17, 2012 Haha Quote Link to comment Share on other sites More sharing options...
jangle Posted February 17, 2012 Report Share Posted February 17, 2012 Hopefully you start feeling better soon Lemons. You're in good hands now, hopefully they will find something, also be sure to ask for your renin-aldosterone-angiotensin system levels checked. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 17, 2012 Report Share Posted February 17, 2012 Glad you are at a great medical facility. I hope all goes well for you there, and you get the treatment you need Quote Link to comment Share on other sites More sharing options...
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