Who was that man? And what did he do with my rheumatologist?

[maystone]

I had an appointment with my stodgy, recalcitrant rheumatologist this morning, and you'll never guess what happened. He formally gave me the diagnosis of lupus CNS (lupus with central nervous system involvement.) I have a diagnosis! Which means that I also have a treatment which I'll be starting this weekend. Yay!

I was stunned. Absolutely stunned. We walked in there for the sole purpose of seeing if the latest blood work results were back (they're not); we figured we'd be out of there in about five minutes. And he started off the meeting with his usual "You're here because . . .?" but then he pulled it out and remembered the blood work. And then he looked through my case file briefly and said, "Well it's obviously lupus." What? WHAT? Dar and I just looked at each other, shocked. He started telling me about my prior blood work, and how it definitely pointed to lupus - which is just about the opposite of what he said just three weeks ago when he was kind of pooh-poohing the results as being nothing definitive. Now he's saying that the titres were very high and there's no doubt, blah, blah, holy cow, blah.

The light finally dawned for us when he started talking about the report from my neurologist. It's the dementia that got him off his ass and up on the lupus bandstand. The dementia and the lesion on my brain. Hey, whatever it takes, doc :)

I'll be taking prednisone and plaquenil to start. As the doctor said, this now becomes a balancing act, trying to figure out what works and at what dosages. Both of those drugs can have pretty severe side effects, so it's a mixed blessing. But at least it's a start. If these therapies do the trick, I could be feeling better very soon. I was telling Dar, I've forgotten what it's like not to be dead tired and in pain all of the time. (There are others on my flist who are fighting the same thing, and I wish I could share these treatments with you, truly.) I'm trying not to get my hopes up too much, just in case I run into problems with these drugs, but boy - I'd be lying if I said I wasn't excited about this :)

There's still the matter of the missing blood work. This will tell me whether or not I have APS, which is a frequent companion to lupus. If I have it, I'll be at high risk for stroke or heart attack, so I'm anxious to find out what my results are. It's been a month since I had the blood drawn, but the doctor said it's not unheard of to have to wait 2 or 3 months for it! He thinks that because it's an uncommon test, the lab waits until they get a certain amount and then pool all of the tests. That's ridiculous. And unethical. I've actually read reports from some people on different lupus boards who have had strokes while waiting to start treatment. (I will not obsess about this. I will not.)

And of course there's the brain nonsense to figure out. It's looking good that the lesion(s) and the atrophy are solely because of the lupus, and if that's the case and the damage isn't too extensive, a lot of it can be reversed. Big smile going on here :)

I'll still be seeing the new rheumatologist in London. (Dar thinks that Hanna, my current rheumy, knows about the referral to her, and he wanted to hand me the diagnosis before she did. Could be.) Hanna is, in his own words, "old school", and I really need someone more progressive on my side. The two of them will be in touch with each other about my care, so that will be great.

So that's the great news of the day. Great for me, anyway :) Now I think I'll do some research on those drugs and get me some sleep.

Comments

[drocera.livejournal.com]

Well damn - it's about freaking time! I hope those drugs kick in toot sweet and you start feeling like your old self real soon!!

[neonhummingbird.livejournal.com]

It feels strange to be congratulating you on finding out you do have lupus CNS, but I understand the relief of finally having answers and power as you start treatment, so YAY! I'll think good thoughts for the quick success of treatment, and hope you start feeling better soon.

[finitejester37.livejournal.com]

Diagnosis, yay!

I gotta say, the idea of prednisone makes me cringe. I've been off it for 5 years and I still curse various lingering side effects from it. I worry, but I'm glad you're in good hands (those being Dar's, not the Canadian medical system *g*).

My aunt had lupus and while I was on prednisone, we'd compare doses whenever I visited :-)

[maystone.livejournal.com]

Aha, you're a prednisone veteran! I had no idea. OK, gird yourself because here come the questions. Why were you taking it (if you don't mind my asking, of course)? What was your dosage? How long were you on it? And what were those side effects that are still making you cringe?

How's your aunt doing? You mentioned her in the past tense, so I suspect that she may have died, eh.

[caerwynx.livejournal.com]

*glomp*

[dumbphilomel.livejournal.com]

I'm glad you are finally getting a treatment plan together. :-) Also, I will be of the visiting, as soon as I have a free day, which is looking unlikely. At this rate, I may be swinging by on a stat holiday like Christmas Day or something, and not cleaning the basement like I'd planned, but ... if I did do that, is that still ok?

And I'm also glad you still have a second opinion planned, so you can just be sure :-), and I hope you respond very well to the treatment plan right away!

[circumspectly.livejournal.com]

Daaaaaaaaaaaaaaaaaaaaaamn skippy! Congrats on the diagnosis, and the moving-aheadedness! I hope that the treatment goes well for you...nah, I hope it goes SUPER for you! I'll just be over here sending *good vibes*.

[sffan.livejournal.com]

WOOOOOOT.

I'm so happy for you.

*fingers crossed that most of the problems are reversible with meds*

[budclare.livejournal.com]

YAY!

[wicked-goddess.livejournal.com]

That's wonderful news! I am so happy that you finally can start being treated. *hugs*

[llaras.livejournal.com]

Wow. I'm a bit stunned. That's really good news.

[vchrusch.livejournal.com]

That is good news.

[hawkmoth.livejournal.com]

Wow.

Good luck with the drug regimen, and I'll be praying you'll feel better soon!

And I thing you need some sort of "blah, blah, blah, Holy Cow! blah" icon.

[sparky77.livejournal.com]

Hooray for an actual diagnosis!

[malterre.livejournal.com]

I think that one of your friendslist was onto something with you getting that medical degree...
I pray that this is really it and that the treatments are just what you need.
*love*

[maystone.livejournal.com]

Love back at ya, my friend. I'm sorry I've been so out of touch. I think about you, I worry about you, I wish you were here to visit again. Any thoughts along that line?

[lunda.livejournal.com]

Yea for a diagnosis and knowing what battle you will be fighting and being equipped to fight it!

[raynedanser.livejournal.com]

Grr, I think LJ is hiding posts on me again as I didn't see this until your most recent post and then I went digging.

One of my best friends has it as well. I don't THINK hers is CNS, though. She's been on pred and it makes SUCH an immense difference for her, it just sucks you two (and others) have to weigh pros and cons and decide which is the lesser of the evils.

Hang in there, it does get better. You beat the flare and then things are good for a bit.

Also, this is a very interesting site: But You Don't Look Sick? (http://www.butyoudontlooksick.com/) - the spoons analogy is especially appropriate. ;-)

[maystone.livejournal.com]

I'm a regular spoonie these days. Heh. That's a great site, isn't it? Yeah, from what I've been reading CNS involvement isn't all that common; it's usually kidney, liver, heart, skin. Let's face it, none it is something to write home about :)

It's great to hear that the prednisone had such a positive effect on your friend. It's always good to see that silver lining, you know. Thanks, sweetie.

[raynedanser.livejournal.com]

The spoons site absolutely rules. :D

My friend has SLE and something about pneumonia that basically amounts to having chronic pneumonia on top of everything else. OH BOY?