AngelicBrat is finally back home again :) - Lupus Message Board

AngelicBrat · 09-07-2004, 11:56 PM

Hi Everyone!

I think that I am back again!!! Things have been so crazy around here this summer with weddings and all sorts of stuff. We only have one phone line and I have a sister that is 15 (13 years difference between us!) so she likes to chat on the phone or the net all day and night. I am surprised that her ear and fingers haven't fallen off yet!!! LOL Anyway, here I am hopefully for good again. If you guys have questions for me (which I am sure you probably do after this long) please post them in this so that I can answer them without having to start 10 pages back on the board. Also, I would love to hear how you guys are all doing. I hope that you guys had a decent summer and I was thinking about you lots!! Take care you guys

~Love, Angelic

elegantgi · 09-08-2004, 04:01 AM

Hello Angelic,
Its so good to see you back on the boards. Sounds like you are in good spirits. Let me tell you whats been going on with me. I was diagnosed with MCTD with Lupus/Polymyositis. I think the Polymyositis diagnosis was wrong because the Rheumy based it soley on a slightly elevated CPK of 253, which is now down to 135 with no medication. I think that I only have SLE, Raynaud's, TBMD and IBS. The TBMD is Thin Basement Membrane Disease (Hereditary Kidney Disease). This was found during my Kidney Biopsy. I have had another severe bout of excruciating chest pain to the point where I couldn't move because of the pain and I just set still and let the tears roll down my face. I told the Rheumy about it and he said he doesnt know whats causing it and he'll have to keep an eye on it. He didn't run any test though. I have started getting purple reddish splotches on my legs and now on my face as well as a rash around my mouth that is now becoming what looks to me to be hyperpigmented as well as raw pink above my lips as well as weird reddish spots on my stomach. Its funny because they seem to fade before I can show them to him. I am still having joint pain, ear fullness pain, and a really weird symptom of when I lay down and begin to rest my whole body starts to tremble. My doctor has wrote off these symptoms as stress. Bullcrap and I know it. I also have a cyst on my left foot that my GP told me was a ganglion cyst. He burst it and it came right back. Now its a larger cyst still on my foot. I showed it to the Rheumy he said it was probably nothing and didn't give it a second that. I have a Podiatry appt in OCT. Finally Rheumy changed my medication from Darvocet to SOMA, I had an immediate allergic reaction after only one dose that cause me to break out over my entire chest area. HE told me I was too sensitive to medication because on Darvocet I couldn't function and Tramadol made me extremely nauseous. My final blood work after the positive ANA. The only two things that were abnormal were the CPK at 253 and low C3 can't remember the number and a lower end of normal C4 level. What do you think?????ElegantGI

elegantgi · 09-08-2004, 04:06 AM

Hey Angelic,
Forgot to tell you something that was really strange. When I was tested for the Anti-centromere antibody the results came back saying "Patient was negative for Anti-centromere however, other flourescents were seen which are indicative of other antibodies, please call the lab for further evaluation." When I asked the Rheumy about this he told me it meant nothing and that was just something they put on there for GP's that didn't know any better what do you think?????? I think is a bunch of garbage and he just didn't want to know......

Sampy123 · 09-08-2004, 05:31 AM

Just wanted to say hi and welcome back!
Shari

99 stang · 09-08-2004, 02:12 PM

Hello Everyone, I have been reading and reseaching everything I can on Lupus b/c as of last week my new rhemy has informed me that what I thought I have (no one else was listening) is Lupus! I was dx last August with Hemolytic Anemia with a red blood count of 4.3 was in and out of hospital for 2 weeks. My count would go up a bit and then down a whole lot, so in Feb. of this year my hemo thought this is it I was told by 2 doctors that it had to go. Well I wasn't going to give in but and all the fuss I decided well go ahead have it! Well here it is Sept. and I am no better now than before. My platelets are extremely high and I am taking hydroxydrea, I am also on blood thinner an low dose asprin a day due to the blood clots I developed a week after I was released from the hospital in which I had to go back to stay for another week. Well about 2 months ago I starting getting really bad joint pain in my arms, knees, wrist, it was so bad I just wanted to die. Once I got into bed at night that was it I did everything I could to get back out just to go to the bathroom in the middle of the nite and while everyone was asleep I would just cry. Well I did get an appointment with a rheumatolist and she took like tons of blood, did some testing and then the call came. She says you were right you have Lupus! I see her on the 17th and I have lots tons of questions to ask her she informs me that I just didn't get it now that I have had it for awhile. Hello where were these other doctors!!! I am going to Philly at the end of this month to the University of Penn. (per my son) Grrrrrrrrrrrr thinks I am going to hear something I haven't heard all ready LOL
My rheumatolist has me on celebrex 200 mg 2x a day and hydroxychlor 200 mg 2x a day and I do some relief I have been reading and peeps have said it takes a few months for these meds to kick in.
Well I think I have went on alittle long here but I just wanted to talk to someone who knows what I am feeling. In fact I don't know how I should feel about Lupus. I am concern don't get me wrong but I am going to push on as hard as I can and I am not going to go down without fighting!
Thanks and good luck to all of you. Marilyn