Wish I didn't have dx
I have had 2 TTTs. Both tests showed IST and POTS. During the first I also had SVT and cardioinhibitory and vasodepressor responses resulting in syncope. Since POTS/dysautonomia have been entered into my chart, everything I experience is explained away as being my dysautonomia or POTS. I've consistently been hypertensive and tachycardic for 2 decades (I'm 37). I got an infection in my stoma (GJ for gastroparesis) and became hypotensive. I've consistently had BP with MAPS below 65 for more than a month now. Before my HR was elevating and compensating. Now, I'm also bradycardic and feel like passing out even while lying down. Recently, I gained 5lbs in 2 days (this is uncharacteristic for me - I've been dropping weight for months unintentionally). I've been having shortness of breath and coughing while lying down. I've been having chest pain these last two days. I've had blood draining from my G-tube for the last several days. Increased abdominal pain. Increased nausea. My PCP and GI tell me to go to the ER. I don't want to go because I know how this goes. They run labs, tell me they look great, and it is just your POTS. Follow up with cardio and PCP.
This time though, especially, I just don't think this is my dysautonomia. I feel too sick for OP to help and not sick enough yet for the hospital to help. But sick enough that I can't function.
What do we do? How do we get doctors to not just decide it's POTS/dysautonomia and stop helping us find answers or at least rule everything out in the differential? My gut tells me something is really wrong and getting worse.
Terminal Pro BNP - 443.6
WBC: 5.22
RBC: 3.31
HGB: 10.5
HCT: 31.8
Protein: 6
Albumin: 3.7
Calcium: 8.6
Urine:
Blood +3
RBC: 37
WBC: 40