Again, it's after midnight and I'm still on the internet. Reading blogs, or at least finding blogs for later reading. It's slow coming. I don't know a whole lot about my condition or any of the others in this category or what else I may or may not have. I've been diagnosed with a few things, most under the "completely harmless" heading that requires no care. One that they want to medicate etc. But to be honest, I feel like I'm floundering in a sea of the unknown. I don't like it. Usually I research the hell out of something but I haven't had much luck. I've found a little bit, but not as much as I'd like. Type in pregnancy or cancer or anything like that and you'll find hundreds of web pages, books, specialists. NCS, I've only found a few. And the info on those pages aren't as extensive. Not to mention my diagnosis list is incomplete. I've not gotten complete up to date diagnosis' on stuff I know I have simply because of bad history with doctors, bad experience with meds, not wanting to take certain meds etc.
I know I have NCS, I'm seeing a cardiologist and an electrophysiologist for it. My primary doctor would have referred me to a neurologist but I got the NCS diagnosis first. Through my second (of 3 so far) echocardiograms they found out I have a mitral valve prolapse (which isn't that pesky all things considering. One of my other valves is faulty as well but less than the other. I think my cardiologist referred to them as murmurs. It's been a while so I'm pretty fuzzy on that one. I also have inappropriate sinus tachycardia. Lately it's been close to normal with my baseline in the 80s and 90s but it's easy to get it up in the 130s and even higher. Stupid easy really. When I was pregnant with J my baseline while sleeping was 115. Though my cardiologist (well, former since he moved) said it's perfectly ok for my age. Apparently if you take the number 220 and subtract your age, your heart rate can "safely" be any number below that, so according to that, 220-22=198. I'm not sure how accurate that is long term but it's true enough short term. 6 minutes into my stress test and my heart rate was 190 and then I got out of breath. Well, less than 6 minutes but the nurse asked if I could continue since the segment was almost over. I also have infrequent heart palpitations, less often than passing out but I have them. The first time I had one was 2007, Superbowl Sunday. I was laying on my couch online while R watched the game. We only had S at the time. I went to the ER and got yelled at by the doctor. He tried to tell me it was anxiety (which I'll get to in a sec) and when I told him I knew what anxiety felt like and I was sedately laying on my couch under no stress, there was nothing to cause an anxiety attack, he yelled at me. I've never been so enraged at a doctors ignorance. If you don't know the cause fine, don't discredit me because I'm young. Or whatever reason you chose to discredit me. I'll respect you more if you own up to not knowing what's up. Even if you suspect it's anxiety try this, "I think you're suffering from an anxiety attack." If I protest, a simple "It's possible it's something else but without further information I'm afraid I can't help you." My primary doctor thought anxiety was the root of some things too. I know differently. I had my first anxiety attack before my 10th birthday. I had several full on attacks while I lived at the beach and it was diagnosed there. I was in therapy and on an anti-anxiety medication for a while but it made me feel lifeless. I wasn't anxious but I wasn't anything. No emotion. I also know how I feel when the anxiety is minor, or different. So don't tell me you know better than me when I've lived with anxiety and I tell you this isn't it. I have migraines, several times a week/month. I have muscle aches, mostly my neck and back but others as well. (It's also been suspected that I might have PCOS or endometriosis or both but never confirmed and we're not on that part of my anatomy.) There's more but I can't think of everything right now. I can't stand for long periods. I can walk ok for a bit but standing is a chore. Cooking actual meals I often have to sit down. If I stand for long periods of time I get week, flushed and dizzy.
Anyway, I'll probably think of more later but J is yelling for me. Tata for now.
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