Sorry if this is kind of disorganized. I had a $^$&@* time today trying to sort things out with my doctor and insurance company, and can't think too clearly. My doctor is resisting the idea of autonomic dysfunction, but after taking my blood pressure lying down (110/60) and immediately upon sitting up (no reading at first, asked me to flex my hand several times, then 90/70), she was confused and agreed to refer me to a specialist of my choice, or for a TTT, "just to rule it out." I don't think she measured my pulse, but I told her that it (always) shoots up over 30 bpm, and past 120, when I stand up, so she's aware of that as well, unless it went out the other ear. At first she said that fatigue isn't associated with POTS, but it's pretty easy to find literature contradicting this. At the moment though she's really holding on to the fact that I frequently get a low-grade fever and joint/muscle aches and pains along with symptom flare-ups, and tells me that this would rule out POTS/dysautonomia as an explanation. I know that some people have these symptoms as well, however. I wanted to ask if anyone's aware of any literature I could give her which specifically associates these symptoms with dysautonomia or POTS, if they are in fact associated (something more than anecdotal reports)? I'm open to being wrong, I just don't really think I am, at this point. Aside from that, I do get the sense that she would accept a diagnosis from a specialist, but at the moment I can't get an appointment that won't require months of waiting. On the other hand, I could have a TTT at the end of this month, which would likely speed things up. Unfortunately, my insurance won't cover it, and although it is possible to appeal this, my doctor is somewhat hesitant, as she still thinks dysautonomia is unlikely. If I can convince her that my symptoms are consistent with it, she may however be willing to make a go at the appeal. I know that I need to be more patient, but I need to speed things up if possible, because I will be applying to grad school at the end of this year, and a diagnosis will likely affect my decisions on that front (for example, where I'd be willing to move, if I'd want to defer acceptance). If anyone can suggest another way of dealing with this, or a different course of action, or would just like to tell me that I should have more patience, I would be really thankful! My history, briefly: 1st 3-month flare-up immediately following some kind of viral illness and an immense amount of stress. Several flare-ups since then, lasting from several days to 2-3 months, associated with stress and/or intense aerobic exercise (I've learned not to do this anymore). In between flare-ups, still have exercise intolerance and cognitive defects, to a varying degree (tends to get worse after each flare). These symptoms seem to run in my family (father and particularly paternal grandmother, possibly her mother and my sister). Symptoms (constant): -postural hypotension: bp drops around 20/10 to 30/20, sometimes more, immediately upon standing up from a sitting position, often feel dizzy and have to sit down or hold on to something until I stabilize. BP normally low-ish, between 100/60 and 120/80. -postural tachycardia: heart rate rises about 30bpm, up to 40 bpm (120-130), immediately upon standing up. Within 3-4 minutes of "just standing," rises an additional 20 or so bpm. What happens beyond that I don't know yet, except that I feel crappy at the time and get chest pains for the rest of the day if I do the 3-4 minute thing. -anxiety -feeling "out of it" and detached from surroundings Symptoms (periodic, any combination at any given time - previously I thought they were psychosomatic or just non-pathological): -debilitating fatigue worsened by any amount of exertion, however mild -dizziness/lightheadedness whenever upright -exercise intolerance -heat intolerance -chest pains/tightness -low-grade fever -muscle/joint aches and pains all over -sleep disturbances - keep waking up, or can't fall asleep no matter how tired -short term memory problems, inability to concentrate, brain fog, difficulty speaking -tingling in arms, face, scalp -feelings of numbness, waves of pressure in my head -intense localized headaches -areas of my body going numb without me sitting/lying on them (usually relieved if I shift position though, at least mostly) -shortness of breath (not severe) -weird sensations in chest area I can't put my finger on -palpitations (usually in a "fight or flight" situation, though)
