New dx - Lupus Message Board

MichelleS · 04-18-2001, 06:26 AM

I am new to this web site; I don't know where to begin.
I am a 47 yr old female. About 7 months ago I became very sick with right side pain, very high liver function test, fever and fatigue. The last 7 months has been a real challenge. I have been off work, suffer from extreme fatigue, some hair loss, some joint pain, memory loss, just to name a few. At first they said I might have autoimmune hepatitis. When my liver test went back to normal they ruled that out. I have a very positive ANA, it remained high. I have been to a gastro, hepatologist, and a rheumatologist.
Now finally after 7 long months the rheumatologist tells me that my lupus panel has come back positive. I have an appointment with him next week. I just don't know what to expect. I have such mixed feelings. I am glad that I may now have an answer to what has been going on for the last 7 months, if I look back over the last few years, if I do have Lupus, than that explains a lot of medical things from the past. I just don't know what to expect. I was hoping for an easier answer, something that would go away. Doesn’t look as though that will happen. If any one can give me some insight to what I may be faced with in the future or a list of some good reading material, I would be very grateful. I appreciate any information that you could share. Thank you for any help you can give me. I know how had the fatigue can make answering this post.
Michelle

BJMILLERJB · 04-21-2001, 09:36 AM

Hi Michelle! I am just trying to figure out what is wrong with me as well. I have a positive ANA and everything else comes back normal...however I talked them into giving me an ANA titer test and that came back positive as well...low to moderate I guess anyway I am not sure what happened to Jeri and Ann on this board, they have always been a wealth of information and very helpful and supportive. I am just hoping they are doing ok health wise. If you read some of the old posts from the two of them you will likely find some very useful information. One thing Jeri always says is to realize this is something you have been living with...now you just have a name for it. Take it one day at a time.

Jeannie

Ann S · 04-21-2001, 07:57 PM

Hi Michelle,
Welcome to the board! This has been a pretty supportive group for me and I'm sure they will be for you. (Even tho some of us have been a litttle lax lately)
It's hard to say what's ahead for you cause it seems the variety of diseases each of us has is different. I hate to refer you to read old posts, but I do think that is really helpful, so pull up a footstool (so you can raise your legs up) and prepare for a long read. You'll find some good research sites too. I remember the first place I checked was rdhealth.com. They had a complete list of all the AI diseases and went into detail on all of them. Print them out and read them when you're resting.
I'm kind of newly dx since Jan. of this yr. too. I have Rheumatoid Arthritis, Lupus, and Raynauds......the old dx's that I've had before that are related are carpal tunnel and IBS. I noticed your age.....I firmly believe that going through menopause is what set my dxs off. In fact, for 2yrs. I've been blaming the minor symptoms on aging and menopause, till they got so bad I couldn't rationalize them away. The research says hormones are connected, but they put us out of the usual normal age group for having these dxs (20-40yrs.) I thought I was done with meno about a yr. ago, then 8 months later I get my period and the night sweats again, and boom.....that's when the symptoms got really bad.
I remember that initially, and often times now still, it is all overwhelming coping with the fear of the unknown, the emotions (anger, frustration, depression, denial, etc,) and the fatigue. So, just ask questions whenever you need to, and try to get a little research done when you can. Don't feel bad either if you just use us as a shoulder to cry on sometimes too. As you read the old posts you'll see we all do it. They'll probably hit you with a ton of prescriptions to take too. Different people react differently to these too, but I'm afraid most of them have some side effects. The best advice I got about these was to only start one at a time, so you at least knew which pill you were reacting to if you do have problems with it.
You didn't say if you have a family or not. If you do, they'll need to understand what it is you have and what you're going through......even with that, there'll still be a lot adjustments that you'll all have to work through.
I think that's enough for now. Take care and keep in touch, Ann
p.s. It's an unwritten rule that we're forgiven typos cause of our fatigue and poor 'mental' connections!!!!

FLBucki · 07-25-2005, 11:41 AM

My mother over 30 years ago was initially thought to have rheumatoid arthritis. Turned out to be the milder form of lupus. The disease apparently skipped over myself & my sister, but hit with savagery on my firstborn teenage daughter. She has SLE.
Books you can read: The Challenges of Lupus, The Lupus Book by D. Wallace & also Living Well With Autoimmune Disease. Also, please go to google and set a google alert. Anytime anything comes out regarding lupus, i get an email with a link to that site.
Think positively, we are! In fact, my daughter literally wrote her college admittance essays with a chemo drip in her arm. I kid you not. Want to know the essence of her essay? A variation on "when life gives you lemons". I, however, prefer to see it as drawpoker. You can be dealt a crappy hand, but you can always draw to improve!
See also alternative therapy books as well as nutrition books. We have changed our eating habits. We try to do as much organic as possible. Gone are diet sodas. I avoid anything with corn fructose syrup. I try to stay as natural as possible. The house is immaculately clean, as she is immuno-suppressed, and during the chemo months and thereafter I disinfected each & every surface before she woke up.
Keep the chin up, do your homework. Look up hospital websites, they are fantastic. AVOID some of the lupus boards --- you will know after 1 minute of reading. Hang onto the ones you find useful.
Hope this helps.