NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › My Dr. doesn't know about POTS or autonomic disorders – please help! › Reply To: My Dr. doesn't know about POTS or autonomic disorders – please help!
Hi robynne, This is so frustrating!! I, too, had to FIGHT to be diagnosed, even though I knew what it was! I even waited 9 months to see a “POTS specialist”, and he refused to believe I could have POTS, and didn’t even put me on a tilt table (which is MUCH more accurate than what your doctor did — incorrectly — for you). Yours did what we call a ‘poor man’s tilt table’. I finally just went across the country with a letter from my neurologist stating that he believed I had POTS (he was a dear to do that — he didn’t even know what POTS was at the time!). Thank Heavens, they put me on a TT, and I was what they called a “flaming case” of hyperadrenergic POTS. But then, when I was certain I had EDS (my POTS was no better after a year, and no treatments were effective), I had to ARGUE with the doctor about it at Mayo! Really?! Finally, I told him that I needed to know for my kids. He “let me” see the geneticist who believed me “as soon as she shook my hand” she told me later. Honestly, in some areas of the country, it is easier, and doctors seem more aware of this condition. But I felt like I lived in a ghost town of intelligence! Honestly, every step of my journey has been a struggle and a battle of some sort. My advice to you would be to keep on keeping on! Dab’s advice to ask folks in your local support groups for “good” doctors is a good one. “Good” doctors are ones that are willing to think outside the box, and who don’t roll their eyes when you pull out info from the internet! I was told numerous times that my illness was stress related, or psychological and that just fueled my fire for answers. A TTT is an objective measure, as is a measure of catecholamines for the hyperadrenergic form. Most of my work is trying to point to objective findings that doctors sometimes ignore (our abnormal fingernails, our urine, our rashes, just to name a few). We have a thread here called “good doctors” that may help you. On other “traditional” forums, I see the “traditional” doctors (most of whom tend to recommend the same things — salt, florinef, midodrine, etc). Those symptomatic measures can help many of us, but for those of us who do not respond, my experience has been that they just say it louder, “SALT, FLORINEF, MIDODRINE — DRINK MORE WATER” 😉 ha. If I can shorten your journey, and the journey of so many others, I’d like to try to do that! Please keep in contact, as studies and treatment from my team have begun! Hang in, my friend.