Tuesday, February 12, 2008

I'm abnormal (in my nerves), so now I'm interesting.

My GP just called me as he heard I "was throwing a tantrum." I asked if that was what Linda said. He said he paraphrased her message.

I asked if he had an issue with me as a patient, he said his issue is with "This entire fucking system!" Wow, suddenly I like this guy a lot more. He continued, "In which the treatment of the patient seems secondary." (no disagreement here)

My NERVE CONDUCTION test came back. It says that I am ABNORMAL in the peripheral nervous system. I asked, "Is this a good normal abnormal or an abnormal abnormal?"

He said this was an abnormal abnormal and that now he will package everything together and hope a Vancouver Nuerologist would see me because "This proves you are not a NUT."

I said, "You do put things rather succinctly."

He said he keeps pushing for Seattle because he had two patients who went there and got a course of treatment in weeks instead of months. He also said that he would try me on a new pain trial in a month, once he talks to the Vancouver Neurologist.

Anyway, this shows that with my heart and BP, that I have autonomic failure within my central nervous system AND within my peripheral nervous system, which excludes Pure Autonomic Failure and makes Multiple System Atrophy the number one choice (again!). But until, the doctor said, it was followed up with "scientific testing" no real conclusions could be made.

"Does this mean putting a taser to parts of my body and turning up the current WASN'T 'scientific testing?'" I asked.

He laughed and said it was but now I have to go.......wait for it.....to the Nuerologist. There is one test I REALLY hope they don't do - it is called the sphincter EMG nerve conduction test. I will PAY someone to stand in for me (or if you are INTO getting electricity sent to the nerves of your anus, you can pay me!)

I promise tomorrow to return to regular programming, I am drinking my gatorade and will get some food delivered and will take a pain pill. I never thought I would be so thankful that my peripheral nerves (like arms and legs) are "officially" fucked up so now we can leave the "hysterical/conversion" label behind forever and move on to more painful experiments to arrive where we began, that there is no treatment but now I am "officially" disabled/sick/dying.

Though apparently, in BC, more autonomic cases are appearing this and last year than should be (about 5 times higher than statistics) which indicates there may as yet be ANOTHER yet unnamed autonomic disease.

There is something so sick in being happy that after 14 months, someone 'scientifically' believes me that my leg and arm nerves are all fucked up. And that I am happy? I think the crying comes later right? I mean what am I supposed to do; "Woo hoo, take that Doc!" Pump the air with fist, "I TOLD you I was dying!" Actually each week I alternative what I am "hoping" I have been misdiagnosed with. This week I think I am hoping they will find it was Mono after all.


cheryl g. said...

Well damn skippy - I guess the evil taser test has brought about some good. Hopefully now the specialists will get off their collective arses and provide the care they should have been providing months ago.

FridaWrites said...

I've had that kind of reaction, too, "whoohoo, a diagnosis! Oh wait..." While I'm never thrilled with the actual diagnosis or what will follow, it's validation that one's not nuts. Almost turns me into a young child taunting my sister again, gloating, "See? See? I told you I was right!" Because I was always right.

Lindsay said...

I think the next time you go to the doctor, you should say, "Don't tase me, bro!"

Just a thought.

TomCollins said...

congratulations. they can stop fucking around now and pretending it's all in your head and actually treat you like a person...well, i won't go that far. having had a few of those nerve condutions myself, they'd have to catch me before they got anywhere near my anus. fucking hurts. hopefully the neurologist will offer some help. hang in there. i'm thinking of you.

FridaWrites said...

Elz, I wish, by the way, that there were some kind of miracle cure that would return you to health. It's unfair that we know so much about the human body and can do so little to fix it.

Neil said...

They tase you, then wonder why you're a bad patient...

I can't help thinking, "Where's Doctor McCoy when we need him?!?"

Of course, that question only makes sense if you're Star Trek fan.

yanub said...

Damn. I thought having a nerve conduction test was bad enough (you should have seen the look of fear and then relief on my face when my neurologist began to set me up for a new conduction test, then decided that one every couple of years was plenty--it was like getting a last-minute reprieve from the governor), but a sphincter nerve conduction test? Oh god. Yes, that would right take the joy out of at last having a diagnosis. I'm cramping in pre-sympathy for you.

Elizabeth McClung said...

Cheryl: Yeah, who though the little house by the BIG cemetery would be good for me after all?

Fridawrites: Hard to know what I am supposed to feel; I now have returned to the same provisional diagnosis I have had all along, only now we can go do the rest of the tests of exclusion. Am I supposed to be excited? Since I am pretty sure "Nerve Biopsy" and "Muscle Biopsy" are also in my future. It is interesting how little we do know - pure autonomic failure was diagnosed almost 90 years ago and yet we still don't know exactly what it is, why it is or even what differs from MSA (except one dies right away so if they do that they have MSA). Ironically, as I was talking today to my GP, doctors STILL after 4000+ years know exactly WHY people faint (medically). But yeah, I wish for a wand too.

Lindsay: Actually I was thinking more along the lines of bringing pepper spray and "accidentally" thinking I was being attacked. Or just wearing body armor like Batman did.

TomCollins: Yeah, sort of almost got beyond female=hysterical at last. Thanks, I am sure there are MANY more nerve things in my future and my GP will be so proud that he is able to put me into painful tests in such a timely manner.

Neil: I'm not a bad patient, I'm a tired and cheeky patient. As for McCoy, I'm concerned with the "She'd DEAD, Jim, DEAD. I'm a doctor, not a miracle maker!"

Yanub: Well, I expect they will do the urinary and spincter one because apparently that is part of the progression and from what I have read, to get abnormal results means it has already progressed to point X so I think they will want to test a bunch of other points and see how far it has spread in the peripherial systems. All I can say is, "BIG valium day!" That and it is Still my goal in life to go through life without a colonoscopy - just stating that - know it is unlikely but I have to make a wish list!

Gaina said...

I like your doctor too. Is he cute, young and single? :)

I know what you mean about suddenly being happy even though your body is still staging regulary munities. It's something to do with having knowledge about what's happening to your body and why. You can deal with things a lot better if you know WHY they happen and what you might be able to do to at least lessen the pain/inconvenience they cause.

Donimo said...

When a GP swears and says that medical care is flawed, he seems more human and understanding. But when I read back and looked at how he hasn't been doing what you need as a patient, I think that extra touch of humanity fails to impress. My GP has a lotus flower tattooed on her inner arm and talks about the limits of Western medicine but she blocks me from trying to figure out why I have stomach pain, is deeply distrustful of my thick medical file and thinks perhaps that I seek out too many tests and generally drives me crazy with her slippery pseudo-caring.

I know you're sick of tests and docs and inaction. I do hope you get a good neurologist soon who will at least help with pain control.

Tui said...

I knew a woman who was told she "looked too pretty" to be ill by her doctor.

Well, he didn't stay her doctor after that, of course. She was later diagnosed with Lupus and several other things, unfortunately. But this diagnosis was a relief of sorts.

She wasn't happy to *have* those things, of course. But was really relieved not to be considered a hypochondriac any more.

Man... I was complaining about some electrical shocks, but that nerve conduction test sounds awful!

I like how blunt your doctor is. Sounds like he's on your side.

Neil said...

Ah, you misunderstand my McCoy wish for you, Beth. I was thinking of the movie where he slipped a pill to a sick lady, muttering "Barbarians!"

The swearing doctor reminds me that I once had a boil that caused a bit of infection and caused my wrist to swell to be as wide as my palm. The doctor (Muslim, I suspect) took one look at it and said "Oh, my GOD!"

It's interesting that we get such pleasure out of morbid reactions from the medical profession.

Hoping for a good Valentine's day tomorrow for Beth and Linda - and everyone else too!

em said...

It's so good to read this and know that perhaps your doctor is human after all. It is really hideous thinking of you trapped with these people who have lost their ability to connect with humanity in a real and compassionate way.

I'm super good at denial though and I'm not happy about your diagnosis. I'm holding out for mono.