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Old 04-24-2006, 09:48 PM   #1
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Join Date: Jun 2004
Location: Indianapolis
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diinin HB User
Another lupie

Hey, guys. I pop in here every now and then. In February my rheumy told me that it was looking more like I had lupus. Earlier this month I went back again and she said that it IS. She's been watching me for almost 2 years. I'd read somewhere that diagnosis typically takes two to ten years, so this was quick enough.

She does think that this may be affecting my brain, tho, as I've had some hallucinations. The MRI was fine, altho a lot of what goes on in the brain is chemical and wouldn't show up. I was sure this was affecting my brain, because there are times when I'm in such a fog, people just sort of look at me and scratch their heads. And other times I'm fine. At least I have an excuse now for being stupid!

I'm on Plaquenil, 400mg a day, and two topical steroids to try and get my scalp under control so I don't lose my hair.

Just wanted to update anyone who might remember me!

 
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Old 04-25-2006, 05:36 AM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Another lupie

Dinin, Yes---I remember you---glad you posted! I'm sorry about the Dx but glad you're finally getting treatment. About that brain fog: same with me, was very bad at point of Dx. Did you know that "just" anemia can cause symptoms that can raise brain concerns? Anyway, I'm really glad your MRI looked clear, as that's certainly a huge test to get through.

About your scalp & hair loss concern: are you wearing hats, tight weave & brims? My hair gradually came back to life, too, as my overall health improved (not that my hair would EVER be considered my crowning glory ).

I hope that each day will bring you further steady improvement, Dinin. Take good care & see you later, Vee

 
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Old 04-25-2006, 01:50 PM   #3
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diinin HB User
Re: Another lupie

Yeah, I don't have anemia, tho. My CBC so far has been good.

I don't spend any time out in the sun, normally. I don't like the sun, so it's hardly a sacrifice. The bad news is, I look terrible in hats, so when it's unavoidable, I use an umbrella, stupid as it looks.

My hair's nothing to brag about either--in fact, I've often thought a wig would be a lot easier and would look much better!

Thanks for the good wishes! You're like the anchor of this board, aren't you?

 
Old 04-25-2006, 03:43 PM   #4
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Re: Another lupie

Actually, I think GOLDENWINGS is the real anchor.

I've got an sunblocking umbrella, for important outdoor events (actually, for dog shows ).

Speaking of posting, I hope you keep checking in, too. And I hope the Plaquenil kicks in quickly for you. Take good care, Vee

 
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