Clairefmartin Posted April 12, 2012 Report Share Posted April 12, 2012 (LONG POST ALERT - what's new ) Alright back from doc (neuro-endocrine/dysautonomia kind of doctor). Wow. So apparently my test results are all contradictory, he said I am a paradox I feel so special. All labs (blood) so far normal except they think I have fatty liver disease or a GB issue, which I'm seeing the GI for, and my catecholemine panel did not do what they expected - my dopamine dropped when I stood up and my numbers were the reverse of what they should have been (again - weird). My autonomic function test (CANS) came back very wacky, he said it looks like my sympathetic is lacking, but then overcompensates and goes bonkers. They were a bit hesistant about me seeing Chemali and scoffed a bit at the SFN, said it was usually bilateral, and I only have lab results for my one foot, and the magical Sudoscan (that no one has heard of) came back normal, so he was at a loss as to why my foot is pooling so dramatically, as no peripheral neuopathy showed on the sudoscan, but i have every other sign of neuropathy in my feet and other areas. The problem is, they use weird equipment and base everything on it, and it is geared towards diabetics, not dsyautonomia. So I take it with a grain of salt. They finally are testing my aldosterone/renin/vasopressin stuff to look at diabetes insipidus (or just POTS, as all of us know - low blood volume - DUH), and they want to do a "tapered therapy" approach (which I like). They are setting me up with Physical Medicine Rehabilitation - which apparently is similar to what they do at Mayo/Vandy, they will work to recondition me slowly and correct my orthostatic hypotension and try to do "redistribution of blood volume therapy." He actually mentioned astronauts and deconditioning, and I said you mean Levine's work in TX, and he smiled and said yes, but you don't have a small heart. So that's cool I guess. If that doesn't work, they want me to try Octreotide shots. I have heard about them, but need to read up more. This sounds dumb to me, since it slows your digestion, and I have terrible GI issues. If neither of those work, then they want to try hyperbaric oxygen therapy!!! How weird. So over 4 hours of a visit to be told basically nothing, more testing (uuuhhg), but at least I'm getting (hopefully) some proper reconditioning therapy out of it. Can't wait to meet with Chemali again! Oh and they are so busy because he's such a fancy big shot doctor (he is VERY nice, I actually like him and his staff a lot, it's just annoying), they can't see me for a follow up until the end of August. Anyone done any of these therapies? Hyperbaric chambers? Octreotide? Sounds crazy to me. Thanks. Quote Link to comment Share on other sites More sharing options...
issie Posted April 12, 2012 Report Share Posted April 12, 2012 Claire,They are doing the hyperberic oxygen on many people for many different things. I've heard of it and looked into it one time - but, it was pricey. Has helped lots of people for different things.Sounds hopeful! I know Cornina is using the octreotide and says it has been a lifesaver for her. It helps with abdominal pooling. What all were your numbers like? Are you hyperPOTS with high NE levels or no? What was your flow category - did they put you into one?Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 12, 2012 Report Share Posted April 12, 2012 My dad had hyperbaric for the piece of bone in his head that was being rejected by his body after cerebral aneursym surgery. That was 25 years ago!! It didn't work, but they were trying to get more oxygen to his skull bone to prevent putting a plate in his head instead. Needless to say, he ended up having the metal titanium plate put in it's place and lived for 12 more years, and even went back to work!! Gotta love his determination Is the pooling and neuropathy so bad that they fear it is cutting off the circulation/oxygenation to your feet? How did they determine fatty liver disease? I had hyperlipidemia at an early age, now off meds, because of side effects (not being able to walk to the BR), and because of diet (or lack of one...lol), and dysautonomia my cholesterol levels are better? Just wondering...I'm glad you like your doctor. I like my doctor's too, and that is half the battle!! Quote Link to comment Share on other sites More sharing options...
issie Posted April 12, 2012 Report Share Posted April 12, 2012 Yeah, forgot to comment on the fatty liver thing - me too. It seems lots of us with POTS have this.issie Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted April 13, 2012 Author Report Share Posted April 13, 2012 Thanks all.Issie- I am apparently not hyperPOTS, even though my BP goes up initially if I sit up or stand, then it crashes, and my NE, Cat, Dopamine were low. And my dopamine actually dropped to almost nothing when I stood - that's why they were scratching their heads. I have no clue what that means, have tried to look it up.Anyways, thanks for the imput, I'm getting REALLY impatient waiting on all these tests and results and appointments, i'd really lke to be able to walk (and everything else) again!Claire Quote Link to comment Share on other sites More sharing options...
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