Clairefmartin Posted February 17, 2012 Report Share Posted February 17, 2012 I had my hopes all high for this visit today, and as always, was let down. They did not even stand me up the other week for my breathing test (he called it as CANS test), and I told the tech that I needed to be stood up to see my symptoms - but she didn't want me to faint, and said they would still see what they needed to while reclined with my feet up in my wheelchair (bull!). So all they saw was tachycardia. The PA and doc were annoyed, but I had to push for explanations and lab result numbers. They now have to re-do the test correctly, and will be drawing (at my instistance) standing catecholemine levels - norepi, dopamine, etc... to test for hyper POTS, finally. All my neuroendocrine stuff came out normal, they said I have NO peripheral neuropathy ( is that the same as SFN??? or the autonomic neuropathy?) based on this new Sudoscan test. They didn't think I needed a QSART, or any other tests until we do the CANS breathing test again. All my autoimmune tests came back negative (I'm waiting on the list of what was tested), my MRI (without contrast) was normal for structural abnormalities, which is good. I asked about having another MRI with the contrast and they said "lets see if you even have POTS first". REALLY??? ***!!!! I have had POTS for almost a decade - I offered to show it to them by just standing up. They saw it when I stood up last time, and my BP plummeting as well, but I guess they want the formal tests to show it, but they did not order a TTT. The only thing off was my Alkaline Phosphatase was high (I have to look that one up), and my insulin was a little high, but I had just eaten and am fat from being in bed for over a year now so they weren't concerned. They also told me to go see a GI doc ASAP, i have really bad right side pain, and upper chest pain on the right, and when he palpated my stomach I yelled when he pushed on that quadrant (I have been trying to ignore it). So now I have to go get checked for my gallbladder. Along with the searing pain in my esophagus and crazy stomach acid issues. Oh and my trypase was 4.6 - totally normal, and my methylhistamine was perfect they said, so they don't want to pursue MCAD, but are testing me for another autoimmune marker - C1 Astrase - have to look that one up too. I'm so pissed right now if I could muster the energy to move I would throw something. Sorry for REALLY long angry post. This doc is supposed to be one of the best neuro-endocrine docs in the counrty, and the only one with an autonomic lab in town, and I'm losing faith FAST. I'm glad I kept my appointment at Vandi. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 17, 2012 Report Share Posted February 17, 2012 Yeah unfortunately often it is the case that we dont get the answers we hope for from doctors.I get right quadrant pain at times and Ive actually had autoimmune hepatitis before as part of ank spond.Hope vandy works out better. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 17, 2012 Report Share Posted February 17, 2012 Claire,I'm so sorry that this isn't turning out the way you hoped. Maybe the testing that does get done by this guy will at least help your Vandi appt go a little easier. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 17, 2012 Report Share Posted February 17, 2012 they said I have NO peripheral neuropathy ( is that the same as SFN??? or the autonomic neuropathy?) based on this new Sudoscan test. They didn't think I needed a QSART, or any other tests until we do the CANS breathing test again. What is this Sudoscan test? Just want to mention the autonomic testing I had done did not show neuropathy, but a skin biopsy did. And what is the CANS breathing test? This Dr. doesn't sound totally useless, but glad you're going to Vandi anyway. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted February 17, 2012 Author Report Share Posted February 17, 2012 they said I have NO peripheral neuropathy ( is that the same as SFN??? or the autonomic neuropathy?) based on this new Sudoscan test. They didn't think I needed a QSART, or any other tests until we do the CANS breathing test again. What is this Sudoscan test? Just want to mention the autonomic testing I had done did not show neuropathy, but a skin biopsy did. And what is the CANS breathing test? This Dr. doesn't sound totally useless, but glad you're going to Vandi anyway.That is what I have heard, lots of negative until an actual biopsy is done. There is a neuro from cleveland clinic that just moved here that I have heard is good, and diagnosed a POTS friends SFN, and Sjogrens actually, I'm going to see him next if I can't get it straightened out.Here is a link to the Sudoscan http://www.impeto-me...or-dysfunction/I had never heard of it. It is a set of metal plates you place your hands and feet on, and they measure ionic output.He did say that he thought my PNS was out of whack with my SNS and we need to figure out which is causing the problem so we can straighten them out. So that is promissing.I'm just tired. This is a decade of dead ends, but now I'm so freaking non- functional and there is no end in sight, I am just so angry/tired/worn out/etc.... its really overwhelming. I usually handle things well, but I've been homebound for over a year and I'm ready to see some kind of improvement. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 17, 2012 Report Share Posted February 17, 2012 "This is a decade of dead-ends" -- I hear you!! I totally get where you're coming from. If we would ever get thrown just a partial answer, at least we would feel some kind of hope. Just don't give up, as eventually there will be some kind of answer/hope through research. Someday. Quote Link to comment Share on other sites More sharing options...
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