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Old 03-17-2009, 06:26 PM   #1
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PetiteTattoo HB User
Thumbs up Lupus "for now"...

Just an update... it's been a bit since I posted. I believe the last time was in late January after an appt. with my neuro. Well, things are progressing...

Had a chest X-ray a few days ago, normal. Which is magnificent because the chest and side pain has been pretty bad lately - and of course, no one wants a lung lesion or heart malfunction. Had an EKG the following day, normal.

Saw the Rheumatologist 3/12... appointment was about 2 hours. First time EVER I think someone "got it". I let him ask the questions so I didn't "lead" him in any direction. Talked about all the bizzaro stuff that's been happening, mostly since October but all the way back, too. I brought photos with me of the bizarre rashes I keep getting every night, the screaming redness on my chest, the lesions on my foot, the weird discolorations on my legs that comes & goes and itches like mad, no need for face photos today because I had a nice red "butterfly" with lesions that he could clearly see. He actually asked me about my HAIR! So, I told him, yeah... I just cut it off about 2 months ago -- I was losing so much of it to breakage it made no sense to keep it... He did some tests I'd not had done before... I have no way of knowing if I "passed" or "failed" because some produced pain, others I felt nothing at all. He seemed satisfied nonetheless, so I left it at that. We talked about the pain I'm always in, and the constant chest/rib pain. Talked about my arthritis. Talked about all the weird neurological stuff I've been experiencing. There was much more, but I'm sure you're getting bored right about now.

Bottom line: Lupus (for now) - definite connective tissue disease. Repeated all the necessary bloodwork, and additional ones I haven't had done yet - so that if the Lupus ones don't line up, we have other autoimmune stuff to look at. Definite livedo riticularis/riticulitis - so nervous I am about that - and as an aside, he told me that this is one of those diseases that "mimics" MS symptoms and can most definitely cause brain abnormalities. He wants a repeat MRI to see if there have been any changes since the one done in November. Some of the blood work done looking for antiphospholipid syndrome (sticky blood) - which when combined with livedo riticulitis can cause tia's/strokes, thrombosis. If test comes back positive, I'll be having an angiogram of the heart. Discussed immediate Heparin shots to thin blood. I absolutely can no longer smoke (I quit on Friday). After surgery, life-time blood thinners will hopefully decrease this problem (Heparin/Warafin). Definite nerve pain in muscles, Fibromyalgia. Prescribed Cymbalta for that. I started it on Friday. I'm to continue with the B12 & baby aspirin until further notice (and not miss a dose). Discussed starting Plaquenil. Got a phone call today, my Vit D is 7.4 (ouch)... now added Vit D 1.25 mg once a week and Allbee plus C. Still waiting for other blood test results... it should only be a few more days.

Well, there you have it. You know what I know. I'm not crazy (well, I guess I am but I'm not JUST crazy ). Things will get better, or they won't. But, I'm here, I'm breathing and I'm in pretty good spirits because I'm no longer completely in the dark about what's going on with me. It's just a matter of trying to get the beast in remission, or at least where there isn't a new threat to my body every day.

Even though I don't post much, I read most of what's posted here (and a few other lupus boards)... I appreciate all that have come before me and managed to remain fierce in the face of all of this.

God Bless

 
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Old 03-18-2009, 03:33 PM   #2
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Re: Lupus "for now"...

Petite Tatoo, I'm sorry you got the prelim Dx'es, but glad in the sense that you'll finally get the repeated & new tests, ongoing follow-up, and the treatment most appropriate to more fine-tuned findings.

Your rheumie sounds thorough, and it sounds like he spent time explaining things thoroughly (really rare, in my experience---in fact, a paragon!).

I *think* if/when antiphospholipid antibodies are found, levels matter. i.e., some people don't require therapy, others require only baby aspirin, but others do need ongoing Coumadin or heparin. (My mom first took aspirin, then took Coumadin for life).

As for the other tests, repeats & new, sometimes timing is critical, I've read, because certain of them (not all) rise & fall with flares. So hopefully your timing was JUST RIGHT, then meds more specific to a particular connective tissue disease could commence. BTW, Plaquenil turned my life around. Hard to believe how many of my chronic problems went dormant. While I still get tired & hurt, both are less; plus, that's a short list compared to the list I used to deal with.

So keep us posted when you have the time. Warm wishes to you, Vee (P.S. WE knew you're not JUST crazy. I had a good laugh when I read your phrasing.)

 
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