Guest guest Posted May 25, 2001 Report Share Posted May 25, 2001 thanks to u all from the bottom of my heart for all your input, i cant say how much its meant to me, thanks again, i did get hemex panel done, showed high fibrinogen, 506, do took coumadin for while, then got rechecked, now its 170 i think, so i dont know if i should take heparin now, thanks again, Radha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 if you haven't read about autonomic dysfunction, you might want to take a look at this website. http://www.mitoaction.org/blog/dysautonomia-body-temperature One common and confusing result of dysautonomia for many people is related to body temperature. Kay in TX, 59, AI thyroid 1993/AIH 1995/AIC (AMA-neg.PBC) dx stage 2 1999 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2012 Report Share Posted July 15, 2012 There are no other methods of testing for POTS, OI, NCS or any of those related disorders unless you don't want it documented. It is the most accurate way to document these disorders. Why do you feel they are unsafe? The test you are talking about is the Poor Man's TTT and while it works enough to let you know you need to be tested, it is not proper documentation for disability. Those are tests for POTS, OH, NMH, NCS etc. - those disorders that are part of dysautonomia/autonomic dysfunction. There are many other tests for autonomic dysfunction - the QSweat tests - there are many tests. If you will search my name and Dr. Amer Suleman - I had a complete work up - very extensive. Many of those tests (I listed the test and the description) were for autonomic dysfunction. Most docs do 4 tests for autonomic dysfunction - TTT, QSweat, Valsava Maneuver and I can't remember the last one that is most common. Heading out the door but will look it up in my records. HTH, Marti > > > > Are there any alternative tests (safer) > than the Tilt Table Test for Autonomic > Dysfunction. I know about lying down, > taking BP ten minutes later, then standing > up and repeat. This is not adequate for disability > because tests fluctuates. > > Thanks, > > Kookie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2012 Report Share Posted July 15, 2012 On 7/15/2012 3:46 PM, furstc0404 wrote: > Are there any alternative tests (safer) > than the Tilt Table Test for Autonomic > Dysfunction. I know about lying down, > taking BP ten minutes later, then standing > up and repeat. This is not adequate for disability > because tests fluctuates. What do you mean by " safer " ? I had a Tilt Table Test. They strap you down, so if you do pass out, you don't fall off the table. They hook you up to a blood pressure monitor and an EKG. That's it. Then they just put you in different positions for different amounts of time, and move you from lying flat to upright quickly. I failed the test, which was good news. I've been on extra salt and fluids ever since. That's helped a *LOT*! I was really tired afterward. Jeri <teewinot13@...> @>--->---->-------------------<----<---<@ Dr. Pall's NO/ONOO- Theory/Treatment Discussion Group: TenthParadigmSociety @>----------<---------->-----------------------<----------<----------<@ The Tenth Paradigm - Dr. Pall's Website for CFS/MCS/FM/ETC.: http://www.thetenthparadigm.org @>----------<---------->-----------------------<----------<----------<@ MCS-Florida - For All Chemically Sensitive Floridians MCS-Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2012 Report Share Posted July 16, 2012 Thanks for the leads Marti. Would appreciate if you could let me know of the fourth test. I will read up again on TTT.... From: marti_zavala <marti_zavala@...> Subject: Re: Autonomic Dysfunction Date: Sunday, July 15, 2012, 4:47 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2012 Report Share Posted July 16, 2012 To me, a TTT is safer than just living and standing. You are strapped in, you have an IV and you can be properly diagnosed so you can begin medication to keep you safe. While some people do have issues with their heart stopping, the IV is there for them to get you back! I would rather go through that than have the possibility that I am out and about and am forced to stand too long and then faint/have heart stop but have no meds to prevent that or no IV for someone to inject drugs. I'm not saying that these things did not happen. I can see where someone was worsened by a TTT but they could have been worsened the next time they had to stand too long. All of life has risk - walking across the street has risk. While I don't think we should court risk, having this test done would be crucial to staying safe. If you have hesitation then find the best EP you can to get ALL the proper tests done during the 1 TTT - measuring catecholamines, Trans cranial doppler on artery(ies), etc. OR - don't bother with the TTT, get a doc to start you on the meds (at least the most common) and see if you feel better. Unfortunately, some of the meds can make you feel worse so it would be a long trial and error but certainly do-able. Then it's in your records as a diagnosis. You may not even have to have the TTT. Not sure. Just my 2 cents - not worth much, Marti > > From: Teewinot <teewinot13@...> > Subject: Re: Autonomic Dysfunction > > Date: Sunday, July 15, 2012, 7:00 PM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2012 Report Share Posted July 20, 2012 Hi Kookie, Just found this information on Dr, Enlander's site it is done without a tilt table. " We are testing Cardiac Output (CO) and Ventricular stroke volume (SV) on our ME/CFS patients with a new machine, The Impedance Cardiograph(ICG). We determine the change in cardiac output in lying, sitting, and standing, a more instructive " tilt table " approach. This procedure is especially helpful in showing abnormality in disability cases. " http://www.enlander.com/ scroll to near the bottom of the paqe and you will see this reference. Peace, Love and Harmony, Bev > > > > Are there any alternative tests (safer) > than the Tilt Table Test for Autonomic > Dysfunction. I know about lying down, > taking BP ten minutes later, then standing > up and repeat. This is not adequate for disability > because tests fluctuates. > > Thanks, > > Kookie > Quote Link to comment Share on other sites More sharing options...
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