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I saw a Neurologist this week and he suspects that I have EDS and is going to send me an appointment for autonomic disfunction testing. How do they know whether it is neuropathic or non-neuropathic POTS?
Your advice would be appreciated.
Brenda, Non-neuropathic POTS is a diagnosis of exclusion, meaning they will rule out neuropathic POTS. Does that make sense? A great panel of blood work to do this is in the book, page 89. See it? 😉
Thanks Dr Diana
I must have missed this and will look it up. An EDS diagnosis seems to be one small step at a time! I asked about a Diamox trial but the Neurologist said its use for EDS/Chiari is still in the research stage.
All the very best
Hi Brenda, I am going to respectfully disagree with your neurologist. The use of Diamox for high intracranial pressure is NOT new science. We certainly do NOT need to do “research” to test a medication for a particular group of patients (such as EDS). What The Driscoll Theory revealed was the propensity of EDS patients to develop high ICP, usually responsive to Diamox. If high pressure is suspected, Diamox is the number one choice for treatment (FDA approved). This is not a new medication, we know the risks and benefits, and physicians do not need to fear it! Now brain shunts — THOSE are scary. Diamox? Not so much… 🙂
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