Monday, April 27, 2009

A long rant (moved from my knitting blog)

** Originally posted on my knitting blog (by accident) on the 23rd **

OK - you know that last week I had found out more about B6 toxicity symptoms and that I had a theory I wanted to discuss with my doctor and to get screened to see if that might just be the key to the mystery of my health issues.

I've started having symptoms again - and things are getting worse. And, as per the "plan of action" (or lack thereof); I'm supposed to call my doctors nurse so she can inform the doctor so they know what's going on. So, I do. Only the regular nurse is on vacation this week. I leave a message with the new nurse to call me. She tried to call, I was tied up on a conference call. I call back. She doesn't call back. I call the following day. I called again this morning. I get put through to her and she wants me to come in today. Right away. OK. I was really just hoping to ask to get a B6 test. No hurry... but if the doctor wants me to come in, I can.

My doctor doesn't have any free time today, but wants me to be seen. Since I've been through this before, I'm tempted to cancel; but think - you know what? You just never know; no one seems to know what's wrong, it's good to get extra opinions. Maybe this guy will have some new insight.

He walks in, says he's not going to ask how I'm feeling since he knows the answer is probably "I've been better". Good start. I ask how far back he wants me to go (cause it usually works best to start at the beginning). He says, "I'm just filling in, so why don't I just ask some questions". We talk about the fact that I don't have "new" symptoms; just worsening symptoms. He tries to narrow down exactly what the symptoms are. So far, very good. Right to the point.

Then he starts looking at my chart & questions start to swirl a bit - there's a lot in my chart; and some of it was proven wrong recently. Being on coumadin, but not being on it any more. He was adamant that I should still be on it - I told him to talk to the six specialists who told me I shouldn't be on it. (probably shouldn't have done that). At this point he's complaining that I'm "all over the place" --huh??? remember? I'm answering his questions... I had asked if he wanted me to start at the begining, he didn't feel it necessary, but now, I'm not providing a clear picture.

Then we get to the "why are you here" part and I explain that I want a test to measure my B6 levels. I explain that I'd been diagnosed with B6 toxicity in 07; and that I'd learned online that it might be related to my current symptoms and wanted to verify. Doesn't that sound reasonable? I thought it did. I got nailed to the wall ... the ghist of it was that if I'd already been diagnosed that I didn't need all the testing I was getting; etc. etc. Umm... ok? He made it sound like I didn't need the test. I already had my diagnosis. ? What? ??!

He made it VERY clear that I was wasting his time & my regular doctor's time and that I should have asked more about the toxicity with the specialists.

I think I finally made it clear to him (still not sure) that when I was told I had B6 toxicity that they made it sound like it didn't mean anything. I was NEVER told that it was related in any way to the health issues I was experiencing. I asked "what does it mean to me" -- and got told simply "stop taking the supplements - no more."His response? "That's a concern" -- What does that mean?!

SO, now I'm lost. They are supposed to call me early next week with the blood test results. I'm "guessing" at this point that I should act as if I still have the toxicity even if my levels are normal. I don't know what the next steps are. I don't know if there are next steps. I don't know if there's a specialist to go to (or what kind) to discuss prognosis, expectations. I did understand very clearly that I wasn't supposed to expect any answers from the doctor I saw today.

I am planning on getting a call into my regular doctor and have him help guide me with "what's next".

In the meantime? I'm furious. I'm angry with this obnoxious doctor who was so rude about my wasting his time that he didn't make it clear to me that either "Yes, you do have it and sorry the other doctor's missed it" or "The test will be the proof that you have it". I'm furious that I didn't see this doctor years ago if it was so "obvious" that's what this was. I'm angry with myself for not asking more questions years ago. I'm angry with Mayo for not understanding the condition they'd diagnosed me with to explain to me it's impact on my life. I'm angry that I'm going bankrupt over this whole mess. I'm angry that my innocent son has missed out on so much in his life because I've been sick when I probably didn't need to be.

Some day - probably soon, I'll be thankful that I've got a diagnosis and will know how to keep things from getting worse. I'm not there right now. I'm crying my eyes out and ranting to anyone who will listen, instead. I can't focus on anything. I can't hardly think clearly right now.

I wish I had waited to see my doctor. I know his response would have been more along the lines of - wow, could that really be it? Let's go find out for sure. He would have been happy to help find a solution. He wouldn't have had any answers as to what to expect, but I'm sure he would have been eager to help me find a specialist who could answer my questions. Instead, I practically got reamed by this assinine man who had better things to do with his time. I felt like he was blaming me for being ignorant. And, here... if this really is what's going on? I'm actually the first one to put the two pieces together. Not the doctors. ME. I didn't get trained on this stuff, there's no way I could possibly have known that B6 toxicity was relevant to my condition I was experiencing after I'd stopped taking them. No one provided the slightest hint that I might have to be on the lookout for anything. No one told me that it would explain ANYTHING. As far as I knew, it had no symptoms of any meaning. LET ALONE explain almost 100% of my undiagnosed condition.

I do still think I probably have hypersomnia - it can be caused after neurologic damage... and B6 toxicity can cause nuerologic damage.

So, like I said, I know I should be happy that I finally have some answers. I'm still struggling through the vast amount of emotion going through me right now over the jerk doc (as he will forever exist in my mind). I've been suffering for so long and desperately seeking answers... just to find out that the answer was there, but buried in a bunch of old tests that no one took the time to really figure out.

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