Confessions of an Internet Junkie

Left this morning in the dark to make my doctor's appointment in London. It was bitterly, bitterly cold, but I have to say that it was one stunning sunrise, too. I was wishing I had brought my camera, but in truth I wouldn't have had time to stop and take the pics anyway. Besides, the camera would have frozen.

Two hours later I pulled up at the hospital for what I thought was going to be a half hour stay at most. I'll just never learn, will I? The upshot is that the neurologist I talked with (Dr. Diosy) found nothing out of the ordinary at all with the MRIs I'd brought with me. It was a confusing conversation, because he had never examined me, just relied on the case work done by his resident the previous day. Consequently he was concentrating on the fact that I have a memory loss and confusion and the "foggy brain" syndrome, while I was there primarily because I keep losing my balance. Anyway, he declined to follow my case (no problem there) and referred me back to Dr. Mendonca, the neurologist in Kitchener. I really like Mendonca, so I didn't have a problem with that, but I came out of there feeling as if nothing had been accomplished other than my spending a lot of time commuting for the past two days.

He talked with Mendonca while I waited outside of his office, and Mendonca will be ordering an MRI of my neck and most probably a lumbar puncture, too. Eh, I suppose it was inevitable, and it will give us some valuable information. Time to just suck it up. The wait for the MRI could be up to two months, and in the meantime I get to see just how far this nonsense progresses. At this rate I expect that at the end of two months the guys around here will be hauling me around the place strapped to dolly like Hannibal Lector. Hopefully minus the face mask and the bright orange jumpsuit.

I was feeling down when I got home, but Dar put it in perspective for me. There's no brain inflammation, no tumor, nothing structurally wrong with my brain - and that means that it really could be the lupus causing all of these symptoms. Dr. Pope (rheumatologist) had said that it could be lupus cerebritis, which is a rare form of lupus, but she wanted to work the neuro angle first. That's the frustrating thing about autoimmune diseases; they're diagnosed by exclusion because there is rarely a definitive positive test for any of these conditions. And that takes time.

Then about two hours later Dar, with her mad diagnostic and search skills, finds what really could be the cause of my balance and neuropathy woes: Chronic Inflammatory Demyelinating Polyradiculoneuropathy. (Say that three times fast, I dare you *g*) It's another rare condition, but the symptoms are spot on, and it has been known to show up with lupus and similar autoimmune diseases. She's going to run it by Mendonca, just to give him a head's up.

OK, I've been up for 20 hours now. This prednisone insomnia is killer, I'm telling you true. I should really just try to shut down. Wish me luck.

Oh, I know we keep saying this, but really - Satine looks to be in labor. Dar found her kushed with her hind legs out to the side instead of under her (Sign #1) and her vagina is elongated (Sign #2). If not tomorrow, then Sunday, but I'm betting on tomorrow. Which means I really need to get some sleep! To the Imovane! Awayyyyyy!

No wait, that's not right. Oh yeah, I remember: I have dementia. That's it.

I had another appointment today with my neurologist, Dr. Mandonca (man-DAWN-suh). It had its highs and lows, but as we were waiting for the elevator to go back out to the car, I swore to Dar that either my first child or my next cat will be named Mandonca, because I love the guy that much.

It's numbered from here, because I'll probably be all jumping back and forth on things.

1. He's setting me up with a new rheumatologist. Hallelujah! This is incredibly good news because it's the rheumatologist who ultimately manages the disease, and my current one clearly isn't up to the job nor does he wish to be. Which, in all honesty, could end up killing me. So my man here is looking to get a new doc whose specialty is Lupus CNS. That doctor may be in Toronto or Hamilton or London (Ontario), but I'd be willing to travel for hours each way if it will help me get my health stabilized.

2. Mandonca proceeded to scare the living crap out of me for a few minutes. I'm serious. I have at the moment a diagnosis of mild dementia. That's scary enough (at least for me.) But then he went on to talk about how there are certain forms of dementia that are progressive and incurable; certain medicines will help in the short term but the long term prognosis is dire. And as he's continuing in this vein all I can think is he's telling me that I'm going to lose my mind and then die. Oh. Crap. Happily, he finally moved on to describing the type of dementia that comes with autoimmune diseases and how those can usually be stabilized and even reversed depending on the amount of damage done to the brain before treatment starts. Yay! But then he continues, in his honest and earnest way, to tell me that we just don't know right now which I have. As he put it, I could be one of the unlucky ones who has both an autoimmune disease and an incurable, progressive dementia. Further testing will be the key, of course. In the meantime, all of us are betting on it being a part of the lupus. Which I still do not officially have.

3. For the nonce I am diagnosed with Undifferentiated Connective Tissue Disease. It's kind of the placeholder that's used when it's obvious that a patient has an autoimmune disease, but the specifics haven't been ironed out. For some people, they never are and they're stuck with the UCTD diagnosis forever. I somehow don't think that's going to be the case with me. Mandonca is pretty sure this is Lupus, which is why he's seeking out the Lupus CNS specialist. Bless his heart.

4. He took a look at the MRIs, and he too said that it's a mild atrophy. OK. He wasn't that happy to see the lesion which I know now is on my left frontal lobe. (I thought it was my right.)

[Small aside. I have the Nature music channel on, and right now it's nothing but bird calls. Rocky and Pixel are going nuts trying to find the birds :) They can tell that the sounds are coming from the TV, but since it's just a blank screen it's not making a hell of a lot of sense. Heh. And it just switched to music. The kitties are snoozing out again.]

5. Dar was mentioning that I'm losing my balance more frequently, which is certainly the case. So he had me take a brisk walk down the hallway. He missed me tipping over as I stood up, and when I'm actually underway I do OK, so I briskly walked down the hallway with him trailing behind me, all hunky-dory. But Dar knows the trick, so she called out, "Now stop!" I did and promptly tipped over. Then I turned around and promptly tipped over. Then started to walk back down the hallway and promptly tipped over. Mandonca: "Ahhhh." Heh. I smiled and said, "I avoid going into stores with lots of glassware." He nodded knowingly. Heh again. I believe I'm one of his very first patients, and he's getting his money's worth out of me, so to speak.

6. I had the antiphospholipid test done today at last. It takes three weeks to get the results back, and the lab wouldn't agree to fax it to Mandonca as well as to the referring doctor (my useless rheumatologist), so I'm going to have to try to pry a copy out of him when the results finally come in. Also, Mandonca had sent him an initial report on me dated Oct. 25 in which he requested that I get the apl test along with a few other blood tests. But useless rheumy obviously never read it, because on Nov. 8 he acted as if the apl was a new idea when I brought it up, which means that I'll have to go back over some paperwork to see if I need him to order those other tests that Mandonca requested. (This probably doesn't make any sense to you guys, but I need to have it here to prod my memory to get this looked into.)

7. I've got to try to write up a little email to my brother to set up a time to talk with him on the phone about all of this. Without scaring him. I debated not mentioning anything until I get more information, but that may take many more weeks, maybe months, and I know how pissed I'd be if our situations were reversed and he didn't keep me informed. So, after I post this, I'll work on that.

8. Dar, who you will remember is constantly mistaken for being the nice one in this relationship, has been teasing me non-stop about all of this. "Pooh" and "Pooh-brain" are her newest nicknames for me, because Pooh was a bear with a very little brain, eh. Cute :) It's like Goldilocks and the bears, except with brains: hers is too big and mine is too small. That's why we need sparky77 here, because hers will be juuuuust right.

9. In completely other news, you guys who've visited remember the striped recliner that's Mark's favorite chair? Yeah, well he has been soooooo evicted from that chair by Mirabelle :) She descends from her throne for a total of about 20 minutes a day to eat and then go outside to go to the bathroom. Other than that - sprawled out completely dead-to-the-world sound asleep on her comfy recliner. For a lifelong outdoor cat, she has adjusted remarkably well to the lifestyle of indoor living. dumbphilomel, if you're reading this and your friend is still thinking of adopting an older cat, Mirabelle would be the perfect one for her. Just sayin'.

OK, gotta go work on that email. How about a picture of a very adorable kitty to tie this all up?
( Chloe with her sloe eyes )