Pure Autonomic Failure - The Definition

[Anoj]

This is on the front of the website and seems to match my symtpoms most closely:

A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat.

Wouldn't the bolded segments apply to all dysautonomics, including POTS & NCS? The bolded parts describe my symptoms, so I thought, YIKES, I look like PAF, which sounds scary.

Do the differences between having POTS, NCS and PAF matter to most of you on the board? They never really mattered to me, becs I always figured the term "dysautonomia" best describes my symptoms. All of my doctors seem to think you can have varying degrees of one or more of the different classifications. Based on my test results and limited medical care here, I seem to be a combo of hyper and neuropathic whatever (but not POTS, because i'm rarely tachy), so getting a more accurate diagnosis seemed pointless.

How do you get diagnosed as "pure autonomic failure"? Is it worse than any other kind? How do you know if your dysautonomia is degenerative?

[bellgirl]

That's a good question, since that's what I was diagnosed with by my ANS doctor, when I asked her when saw all these different subsets. I don't like the degenerative part either. I'm better with meds, and supplements and exercise, but I'm wondering how long I will last with all of this. Being realistic, having fought the good fight for almost 15 years now, only about 2 with treatment, I'm somewhat concerned with the years they put on that type of dysautonomia.. I tend to think, after doing research, that I am more hyperadrenergenic. I have high blood pressure, POTS, Orthostatic Intolerance, MVP, and am concerned about my liver with all the meds, frankly, but I depend on God daily to get me through. This week I have found out 2 more diagnosis, which are both familial, which didn't surprise me, but I have to laugh, and actually did on the phone with the nurse! I have 4 appointments alone this week...that's crazy; but the alternative is worse. My mom is 83, and has more energy than I do!!