Tuesday, July 29, 2014

Doctors everywhere

Ok so apparently ALL of my tests other than the 2 hour glucose came back negative/normal. I hate even everything shows normal when I know something is up. My neuro said that doesn't mean anything in regards to neuropathy, that it could just not be progressed enough to show. She adjusted my migraine meds so instead of taking as needed for migraines, I take it daily for the symptoms.

My EP said since the meds aren't helping to just stop the ones he ordered and switch back to a beta blocker as needed and try for Vandy. All the paperwork has been submitted but there's a wait (long one, possibly very long). He also said that he doesn't think a pacemaker would ever work for me where the benefits outweighed the bad. Though he did tell me when I asked, that during the tilt table test I had in 2011, my heart stopped for 10 seconds. But that my MAIN problem was fast heart rate and couldn't figure out which pacer I was talking about when I told him about the one in the groups that helps with blood pressure too. Idk. I'll look it up later. I didn't ask about an ablation. He did say the beta blocker would/should help with the PACs and PVCs.

Thursday we take SDiva back (3 hours away) to her gastroenterologists for her follow up. If she needs to be seen after that we'll switch (probably) to the local one since our insurance is different now. JSmiley is being seen Friday, also with stomach problems. I believe she has dairy issues as well or maybe IBS too. Who knows.

Also, I'm glad to see one of these being shown as a dx. It's nice being taken seriously.

Saturday, July 19, 2014

Doctors, Tests, and Pain... Oh My!

I know it's been a while, again. My phone broke (charge port) and I really can't afford to replace it. So let's see.

I got a lawyer and am appealing the SSI denial.

I went to my neuro over possible neuropathy, the nerve biopsy and nerve conduction were both normal but she says you can still have it regardless, but she also said she's leaning more towards compression palsy. I had several blood tests (of which I do not know the results), plus a 24 hour urine (don't know the results), and a 2 hour glucose, which came back elevated. My fasting was 84, 1 hour was 186 and 2 hour was 214. That's pre-diabetic/diabetes range. So I was sent to my PCP who did an A1C (normal - 4.6) and an insulin resistance test (still waiting). She mentioned I needed to get back into counseling (for anxiety and depression, these illnesses are rough on the mental state as well), that anything further would require a specialist, that she strongly urges me to keep trying to get in to UVA or Vandy, and to see my GYN about PCOS (an ultrasound in 2010, "appeared polycystic").

So, after two MORE vials of blood (on top of the 6 last week), I left my PCP, called my current GYN that I'd had to see with my former insurance. Kept on hold forever then sent to voicemail so I called my preferred GYN (who accepts my new insurance) and scheduled an appointment to see about PCOS.

Called my EP, because in 2+ months I'd heard next to nothing about my referral, plus I'd gotten an email from my hospital interactive chart saying I had new test results. Of the 13 strips I called in, there were PACs and PVCs, mainly sinus rhythm, some tachycardia (mild to moderate). I asked about the auto trigger (no response) and the referral. They said UVA also denied based on insurance but gave me the number to call with my new insurance to try, UVA said they don't/didn't deny based on that, that my report was incomplete and didn't contain my demographics, and that their medical director had reviewed my case and strongly recommended I try Vanderbilt. I told the woman that we'd tried and been denied there based on insurance but that I supposed I could try again with my new insurance. If they deny again then we can move foreward with UVA. So I called my EP, the nurse called back with a number but it turned out to be the autonomic dysfunction clinics fax machine number so I had to google, but finally got ahold of someone who started a chart and another who input my insurance information.  Then called my EP BACK to tell them, that Vandy needed to either speak with Dr. M or a nurse. They called back and said they had requested the necessary packets from Vandy and would call me back next week, they just wanted to keep me informed.

I really HATE HATE HATE playing phone tag. I know all these offices are busy and it isn't THEIR fault my battery dies fastish and needs to be turned off and charged (I have an actual charger for JUST the battery) so I wind up missing half of the returned calls. But I call each and leave a message, they call back and leave a message, I have to call back and leave another, and so on and so forth. Or we wind up speaking but then I have to do something and call back and phone tag starts all over. At least my calls were all returned promptly/reasonably this time...

So I have two more appointments this month and at least one (at this point) for August. I'm exhausted an feel like a pin cushion.

I'll try to post this but my battery is drained so it may have to wait. Hopefully next week brings good news from Vandy/my EP, and lots of test results.