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    Old 09-07-2004, 10:56 PM   #1
    AngelicBrat
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    AngelicBrat is finally back home again :)

    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

     
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    Old 09-08-2004, 03:01 AM   #2
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    Re: AngelicBrat is finally back home again :)

    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

     
    Old 09-08-2004, 03:06 AM   #3
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    Re: AngelicBrat is finally back home again :)

    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......

     
    Old 09-08-2004, 04:31 AM   #4
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    Re: AngelicBrat is finally back home again :)

    Just wanted to say hi and welcome back!
    Shari

     
    Old 09-08-2004, 01:12 PM   #5
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    Re: AngelicBrat is finally back home again :)

    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

     
    Old 09-09-2004, 03:32 PM   #6
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    Re: AngelicBrat is finally back home again :)

    Hey everyone!

    ElegantGI- First, let me say that your Rheumatologist is not right with a LOT of things. He should have called the lab to see what the interfering antibody was because sometimes they can be really interfere with a lab smear because they cloud the slide.. anyway- he should have called to see what interfered! That was stupid on his part. Would your GP call and see what was going on? I think that might be the best way to deal with that situation. If your GP is able to call the lab, then thats great. Another way to deal with that would be to do a FULL antibody work up on you and that would show what was in the way. Have you ever had an Anti-DNA positive? If not, that could be the antibody that was clouding.. who knows hey. So I think its a good idea to get all antibodies retested to make sure that nothing was missed. And you need a new Rheumy too! I do agree that you have Lupus, TBMD, Raynauds and maybe the CPK is elevated because of pericarditis. CK is found in three tissues: skeletal muscle, heart and in the brain and it is relatively easy to decide in any given case where the excess CK is coming from. Since you have chest pain I would get to a heart specialist (cardiologist) to make sure that its not the cause of the elevated CPK. Pericarditis is something that can happen to those of us with Lupus and basically it means that the heart sac is inflamed. That can happen from Lupus for sure. Since you have Lupus and possibly other autoimmune diseases then the possibility of having organ involvement is quite high. I dont want to scare you, but its worth getting checked out to see what is causing the elevated CPK level. I dont want to alarm you but being knowledgable about a subject empowers us! Is your blood pressure elevated? Are you on prednisone or another Lupus medication? I would get in to the GP and see about getting to a cardiologist ASAP.

    Hi Marilyn! I am sorry to hear about the complications you are having too! It sounds like you have had quite a journey with your Lupus too. Have you been tested for Antiphospholipid Syndrome? It is a syndrome that causes the blood to be "sticky" and then it can clot more easily. Please check the criteria at the top of this board to see if you fit into this disorder. It goes with Lupus in a lot of patients and the treatment is rather easy but you can have recurrent clots if it isn't dealt with appropriately. Please let me know if you have a history that includes: miscarraiges, other clotting episodes (stroke, mini-strokes, etc) or if you have a positive anticardiolipin antibody or a Lupus anticoagulant. It sounds like you may have APS going on with your Lupus! Please take care and its nice to meet you! I have Hemolytic Anemia too! Talk to you all soon, and SHARI!! Nice to see you girl

    ~Luv, Angelic

     
    Old 09-10-2004, 02:56 AM   #7
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    Re: AngelicBrat is finally back home again :)

    Dear Angelic,
    The only medication that I am on is Flexiril for my muscle pain. I have been tested for Anti-Dsdna and it was negative. Because i'm in the military and the doctor that ran the test is a civilian, my military doctor cannot do anything about the test but I am going to ask my GP to run another Lupus Panel and maybe that will get me some answers because at this point I don't know what else to do. My CPK level is now back to normal at 135 but I didn't take any medication to get it down so I don't know if it was elevated because I do physical training every day and perhaps that is why it was elevated or what. Also I think I am in the beginning stages of a flair. For the last 3 days I have been waking up with a bad backache that is only relieved by urination. My face each day is showing some different type of skin manifestation like strange hives on my chin, little white bumps around my mouth and bumps on the top of my lips, and a weird pink area right up under my nose as if I had a bad cold and rubbed it raw, discoloration after a rash on the right side of the face, a purple discoloration on the left cheek, and other weird things. I have been having light chest pain on the left side of my chest it feels like its hardness of the chest if that makes any sense and I have been having excruciating right hip pain. I am also really tired. What do you think? Thanks for any insight and I just wanted to let you know that I am glad that you are back and that Veej has really been a great support since you've been gone. Thanks so much for everything.....ElegantGI

     
    Old 09-10-2004, 03:12 AM   #8
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    Re: AngelicBrat is finally back home again :)

    Hello Angelic,
    One more question, on my Complement results this is what I have:
    C3 78 Normals (83-177)
    C4 15 Normals (12-36)
    What do you make of this, I have read that a positive ANA and a low C3 is indicative of Lupus as well as a low normal of C4. Is this true? Thanks in advance....ElegantGI

     
    Old 09-10-2004, 01:15 PM   #9
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    Re: AngelicBrat is finally back home again :)

    Hi AngelicBrat
    Thanks for your reply my answer to your questions if I ever had a history that includes: miscarraiges, other clotting episodes (stroke, mini-strokes, etc) is no, but I don't know if I have a positive anticardiolipin antibody or a Lupus anticoagulant. I go to the Rheumatolist this Thurs. and I will find out when I was there last month she took plenty of blood from me so will ask her for those results. I also have read the your post on Antiphospholipid Syndrome, this is all new to me and I am trying to absorb it all with what little brain I have left these days LOL I am suprised I can remember to return home after a trip to the store. You mentioned that you also have Hemolytic Anemia. How long have you had it? I have had it now for a year so they say. I went to the hemo yesterday and it looks pretty good my red count is up to a 10.8 and I am happy with that and my platletts have come down to 547 so I still have to continue the hydroxyurea for now. I asked the hemo. if there is a chance that one day I will rid myself of the anemia and his answer was yes????? Well thanks for your time and all your help talk to ya soon. Marilyn

     
    Old 09-14-2004, 09:05 PM   #10
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    Re: AngelicBrat is finally back home again :)

    Hey guys,

    elegant: The bumps and rashes are concerning for sure!! See if your GP can get you into a Dermatologist to get that biopsied. How long have you had it for? A biopsy would show what process is causing the rash, so Lupus would show up as a cause if thats what it is. I hope that your GP can repeat the ANA so we can see where you are at! These autoimmune diseases can be so strange.. everyone is different! Please take care of yourself as best you can okay?

    Marilyn: I have had Hemolytic Anemia for about two years now. If the Anemia is from an autoimmune disease then sometimes the levels will turn around and go back to normal. Most of the time patients develop it because of being untreated for the underlying disease process also! SO the good news is that it can correct itself in many cases. Some people do have it for life so its a 50/50 chance! Just keep on taking the meds and hopefully your doctor will keep an eye on your blood levels. Take care okay! Talk to you soon,

    ~Luv, Angelic

     
    Old 09-15-2004, 03:06 AM   #11
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    Re: AngelicBrat is finally back home again :)

    Angelic,
    You do so much for everyone else. How are you doing? I hope that all is well with you and that you are taking care of yourself. If you need some support please don't hesitate to let me know if I can do anything for you. I pray that you are in good spirits and getting through this crazy disease as best you can. We are all here for you as well.....Elegantgi

     
    Old 09-15-2004, 01:01 PM   #12
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    Re: AngelicBrat is finally back home again :)

    Hi, Marilyn,

    Welcome to you. It's frustrating when YOU are pretty sure of something and those silly doctors ( ) don't get it. And like you, I'd hit the point of really plummeting, symptom-wise.

    I lost almost all my really UGLY pain quickly after starting Plaquenil. I still have pain peisodically, but of a much lower order. Ditto with the fatigue. My anemia corrected quickly, too.

    So here's hoping you are starting on the upswing and will proceed apace! Take good care, from Vee (4 yrs.+ on Plaquenil with only plus-es, no lasting negatives)

     
    Old 09-15-2004, 04:47 PM   #13
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    Re: AngelicBrat is finally back home again :)

    AngelicBrat
    Thats for your encourment and I see my rheumatlogist this Fri. so I may have some more questions if ya don't mind. Thanks Marilyn

     
    Old 09-15-2004, 04:59 PM   #14
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    Re: AngelicBrat is finally back home again :)

    VeeJ
    Thanks I really enjoy these broads they are so helpful and some are sad when I start reading their posts to read what some of the peeps are going through I only wish them good health.
    I am on 400 mg of hydroxychlor a day and when I started it a month ago I started to feel better as far as the pain goes, but this past Sat. I woke up with a sore throat and all my joints were killing me it has since past but I noticed that my right hand all of my fingers are slightly swollen and it is alittle hard to bend them so when I see the doctor this Fri. I will show her. Well thanks for the hello and take care talk to ya soon. Marilyn

     
    Old 09-17-2004, 05:32 PM   #15
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    Question Re: AngelicBrat is finally back home again :)

    AngelicBrat or Veej,
    I was just wondering if someone can help me understand what the heck this means. I saw my Rheumatologist today and I think things went ok but here is what I don't get she handed me a copy of the letter she had sent to my hemo and this is what it reads: I am strongly consistent with systemic lupus erythematosus, subacute cutaneous lupus, and anti-phospholipid syndrome. says my ANA is poitive at a dulution of 1:280 what the heck does those numbers mean, and Anti-cardiolipin IgA is positive HUH!!! then it says that I am positive double strandard DNA antibodies and positive SSA antibodies, in addition C3 & C4 are low. Oh NO this sounds scary. Then she continues to say that my chemistry profile was UNREMARKABLE (should I be proud of this comment ) LOL and my sedimentation rate was elevated at 48 mm/hr. Platelet ct. was 598,000 white ct. was 6,200 and I thought I was begining to understand this Lupus stuff I guess I have a lot of reseach ahead on me so for the next couple of days it looks like its just me and my computer, and a pot of java I would appricate any help you can offer. Marilyn

     
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