Clairefmartin Posted February 23, 2012 Report Share Posted February 23, 2012 Had my second autonomic function testing (CANS test) this AM - looks like my sympathetic is WAY out of whack, overcompensating for the fact that I have massive pooling in my right foot - they followed the CANS up with a doppler heat scan test with heated electrodes attached to my feet. There was a huge difference between my feet - my left was high, but my right was literally off the chart (they were actually whistling - that a new one). Funny thing is, my feet don't even swell, just turn red/purplish. I was also FINALLY tested for hyperPOTS, I only lasted standing for a minute for the catecholemine blood draws, then grayed out (lost vision but could hear) and collapsed twice. During the Cannes test (ANS breathing test with valsalva), my HR went up to 150 on standing, BP goes up a bunch, then crashes. I greyed out 2 more times, once while just sitting. They told me I did not present for pots - which I told him was crazy - and we went over the semantics, but it looks like once they find the cause of your pots, like whatever they will call this (hyperadrenic maybe and nmh?) they no longer refer to it as pots?? I'm confused as to why they would keep saying I do not present for POTS, as my HR more than surpased the minimun requirements. Anyone know why they are saying this, or encountered this? So I feel like death, but got some answers (it's a start). I will be taking these results to the neuro in a few weeks, as this doc can't see me to discus until April. The PA mentioned midodrine and full compression stockings. We'll see. Sorry so long!!!! Oh, and they said my ANS is intact and I don't present for MSA of PAF, which is good. Thank God! Any input/thougts appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 23, 2012 Report Share Posted February 23, 2012 perhaops they just think its OI or NMH Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted February 23, 2012 Report Share Posted February 23, 2012 Hey claire, Im glad you got to get another test and hopefully some answers. I know that when I see Vinik, he never says "pots" either but always autonomic neuropathy and dysautonomia. Did he at least classify you with these? The most important thing is that you find someone who will recommend some treatments as well as causes. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 23, 2012 Report Share Posted February 23, 2012 I really think you should ask them to explain why its not POTS based on the POTS criteria and then ask what is the specific dx. I hate it when docs are obscure about that kind of stuff. Then, if you get the notes you end up surprised by what thy wrote to other doctors. Better to have a specific conversation. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted February 23, 2012 Author Report Share Posted February 23, 2012 Rama - I always think of OI as "POTS lite" Yeah, NMH fits, but y heart rate going up 50-60 bpm upon standing is POTS!Jackie - thanks, I'm glad you chimed in, Matt (the PA - have you met him? REALLY nice guy), said I have definite dysautonomia, with sympathetic overactivity, and tachycardia. But kept saying "you are not presenting for POTS". He even said Vinik doesnt believe in TTT, and wrote a paper about how they end up causing misdiagnosis. No neurapathy mentioned, they didnt test me for much in terms of autoimmune stuff, I'm requesting a sjogrens work up and SFN biopsy.Katie - I agree! I am now getting copies of all my tests and visit notes so I can see what they are saying. And we will be discussing the POTS issue, I'll bring the recent Autonomic Society definition of POTS to my next visit, it really bothered me.Oh - and in the good news department - I was JUST approved for SSD! Yay! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 23, 2012 Report Share Posted February 23, 2012 ClaireNot sure if this helps but my auto doc diagnosed me as the following mild POTS with severe Orthostatic Intolerance, moderate dysautonomia and highly elevated norepi catecholamines and elevated BP baseline and standing....although I can present with some hypotension when very hypovolemic. What he said to me was my POTS is not as severe as the Orthostatic Intolerance(that is the biggie!) they are 2 different entitities apparently. Maybe your docs are trying to say the same with you? Mine says POTS is a syndrome not a true diagnosis it is a symptomology of an underlying cause like the OI or possibly MCAD....does that make any sense or did I just confuse you more? Bren Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted February 23, 2012 Author Report Share Posted February 23, 2012 That did make sense Bren, thank you. I'm possible MCAD or autoimmune something, as well - we sound similar. I cant wait to get the standing norepi results, if I'm hyperPOTS/ hyperadrenic or whatever they call it, I will go ahead and pursue the MCAD - they want to biopsy my stomach/intestines for mast cells.I'll have to do more research on OI, I have always thought of that as more of a catch all term when they dont know whats causing tthe postural change issues. And one of the techs mentioned idiopathic POTS - which is a load of crap IMO (I just wrote a LONG blog post on this), something is causing my SNS to be wacked-ified! Quote Link to comment Share on other sites More sharing options...
issie Posted February 23, 2012 Report Share Posted February 23, 2012 Don't you just hate it - when the complications are so complex that it's almost impossible to figure out. That's how it is with me. I've almost decided to stop trying to figure it out and just find something that works. Give me the PURPLE BAND-AID, please. (You know purple is supposed to make you heal faster. But, if it doesn't, it's pretty to look at.) LOL! Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted February 23, 2012 Report Share Posted February 23, 2012 yea, I met the PA for the first time at my last checkup. He does seem really helpful, before it was always just a nurse and Vinik. I had that test on my feet too, one was abnormal but I do not think it is bad enough to pursue treatment. I forgot what the treatment even was he used some big terms. Also, one of my sjogrens blood work came back positive and I think the last one did not. So, I think I have it because I have to use eyedrops but I think mine is mild. I would def pursue all the autoimmune causes although the tests dont always come up positive even though you may have an autoimmune component. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted February 23, 2012 Author Report Share Posted February 23, 2012 Issie - I'm all for purple bandaids!!! I love purple. My "plan" is to go at it hard to get this figured out and get a solid DX before starting the trial and error pharm meds, and make the rounds to all the specialists - then add in the suppliments. I alsways iove up and have never gotten asnwers (over almost a decade), but I am so non-functional I can't afford that now. No one has even tested my D or B levels, and some others I want tested to find out if I have difficiencies.Next stop: neuro (moved here from Cleveland Clinic), a GI doc - need to find one, andmaybe a genetisist if my hematoogist fights me on testing for some of this stuff.Jackie - I know they are testing my C1 emelayse (sp?), which I looked up and is for Lupus. I have asked for Sjogrens, and I asked for my aldosterone levels to be tested (which they did not - annoying!). I also asked fro a biopsy for SFN, I have patches of neuropathy all over, and the techs said they would mention it (b/c my sudoscan came back perfect, but they agreed I needed a biopsy). I'm now taking everything to the neruro Chemali, as he diagnosed a friends severe life threatening Sjogrens that came back neg on all the other tests - it had been causing neuropathy and her POTS, she is now getting IVIG and regained function big time. I guess he is a really great diagnostocian. If you have the name of a GI doc that knows anything about dys in our area (it may be in our PMs) I'll take it Thanks for all the input everyone. Baby steps i guess .... Quote Link to comment Share on other sites More sharing options...
issie Posted February 23, 2012 Report Share Posted February 23, 2012 cfmartin,I have had really bad neuropathies too. When I stopped eating wheat - they have gotten better. When they did the needle prick in my feet - I didn't feel it. But, the testing for it came back normal (over 3 years ago). So, don't know why the neuropathies. It does, run in my family. My dads is up past his knees and past his elbows and his dad was the same. But, you could try eliminating wheat and see if yours gets better too.Issie Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted February 23, 2012 Author Report Share Posted February 23, 2012 Issie - thanks for info - i've been GF since 2004 I think mine are related to a spinal fusion surery, thats when all my issues started. I didnt feel my right foot for a year. inteterstingly, thats the foot/leg giving me isues. As well as thr right side of my neck and face. Weird. Quote Link to comment Share on other sites More sharing options...
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