deucykub Posted March 5, 2007 Report Share Posted March 5, 2007 Hi, everyone!I could really use your opinion/input on something. My POTS doctor (autonomic neurologist) would like me to participate in some research he and his team are conducting. It would be within the next few weeks, and the information gleaned would answer A LOT of my questions about my body and POTS' effect. The research would last about a week, and pretty much all of it will involve the good ol' TTT (lots of ups and downs, ha ha). The last time I had a TTT in November 2006 it knocked me completely out of work for two weeks. I am just within the last month finally able to work about 3 hours a day from home, not exactly a record-breaker there. If I do the research, I'm going to have to stop all my meds. No meds plus TTT will probably throw me into a pretty big POTS hole (I just love that term... who came up with it?). Here's a list of what the research would entail:1. Blood/Urine tests checking blood counts, electrolytes, kidney fx, and liver fx2. General & Neurological Exam3. Brain Blood Flow4. Arm/Leg Skin Blood Flow5. Calf Blood Flow6. Sensory Testing7. Sweat Testing8. Several different types of drugs adminstered9. Ultrasound of Carotid & Brachial Artery and Aorta10. Nerve Activity Test11. Lower Body Negative Pressure Test12. Hand submersion in cold water13. Nitroglycerin administration14. Mental Stress Test (this one is the worst for me - arithmetic in my head - yeah right! I have a decent IQ, but I'll look developmentally stunted!)Lots and lots of information my doctors could use to treat me, and since my doctors are the ones performing the research, it's immediately available for application! No cost to me for any of it, and they actually pay a decent stipend and house you in the hospital for your stay.I'm not sure if I'm getting any better beyond my 3-hour-working-breakthrough. I'm sure that I'll feel pretty crummy after the testing is through. Answering some of my questions would stop the wondering and maybe focus my treatment to what will be most effective. Plus, I believe in helping the doctors research this illness so they can figure out how to make us and future POTS sufferers better!What would you do? I'm leaning towards yes, but I'd really like your thoughts before I decide (the doctor is calling me on Monday to discuss). Also, what questions would you ask?Thanks in advance for your help. I hope you are all having a "good" day.(Yikes! Sorry this is so long.)Deucykub Quote Link to comment Share on other sites More sharing options...
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