Now rheumot. says ANA test negative - Lupus Message Board

Oregongirl · 02-21-2001, 08:48 AM

Yesterday, the rheumotol. says my ANA test was negative, and that 95% of lupus patients test positive for this, therefore, I may not have lupus. I have other things going on that needs further diagnosis. The lipomas are very strange according to him, they aren't supposed to be painful, or brown in color. I am going to need to have the one on my stomach biopsied. My SED rate is 85. I am so weak, nauseous, achy, tired and feverish. I feel terrible. My school is the only thing that keeps me going. I make myself get up and go. I feel good about going.
I am so confused now, and really feel alone. I dont know who to talk to anymore. I thought for sure my diagnosis is lupus. My dr. told me he thought I had it, because of my symptoms. The rheumot. says I only have a few of the lupus symptoms. He says ususually there is more than I am showing, but I think I do have lupus, because almost every single symptom matches what I have. Especially the constant 100 degree fever and the light red color to my face and the aching joints. I really hate the achy arms, hands and knees.
The rheum. must know what he is doing.
I hope I am told what I have soon, and better yet, am TREATED for whatever it is I have. I feel just awful. weak, achy, nauseous, and my upper back hurts in the back. I hope it's not cancer.
Peace to every1 !
Oregongirl

Kathryn · 02-21-2001, 09:15 AM

Hi Oregon Girl!

Sorry you are getting the run around on your dx.. But Lupus is sometimes very hard to dx. You don't always have to have a positive ana. I didn't for a very long time. But, I was treated for my symptoms just the same. Steroids mostly. My SED rate right now is about 48... yours is 84...I know you must be feeling awful... when the sed rate gets up there you feel pretty crappy and I know this from experience. Normal sed rate is 0-20 so yours is very elevated.

Are you taking any medications at all for your symptoms. Sounds like an anti-inflammatory would be in order for at least your aches and pains... I have taken meds for this even before I was dx'd.

Hang in there. Even if you didn't have Lupus, you should at least have your symptoms treated. Tell the doc to give you something before you are knocked on your but and can't get out of bed... in the long run it may prevent a flare up and keep you functioning and living a more normal life. It may also bring down that SED rate.

Good Luck and let me know how it's going.

Kathryn

[This message has been edited by Kathryn (edited 02-21-2001).]

Oregongirl · 02-21-2001, 09:57 AM

Thank you Kathryn, for the support. I will tell my dr. to treat me. I feel like staying in bed. Those lipomas I have are very strange according to rheumot. He says they shouldn't be brown in color or painful. Maybe they aren't lipomas. I will be having a biopsy on the one on my stomach.
My upper back is killing me. I think it may be my kidneys. It feels like it.
I just hate still not knowing what it is.
It's a scary feeling that you are sick and it could be something more fatal than you already may have.
Thank you again,
This really does help.

Jeri · 02-21-2001, 10:24 AM

I am so sorry to hear what you are going thru!!!! I know that your stress level must be to the max- and that doesn't help anthing you have! Look at fibromyalgia descriptions- FM is never diagnosed by test results, in fact often mimics lupus but without theblab confirmation.
Don't get discouraged. You have something physical going on and it is just going to take time. Be glad that your dr is keeping you well informed. also, don't forget that you may be that 10%- someone has to have lupus without lab conformation or there wouldn't be a %-age for that occurrence.
When the dr said you were your ANA was neg- what were the numbers? the numbers represent a ratio- a dilution factor. it would be represented as say: 1:160 or 1:640 etc. Most labs, I understand, consider anything over 1:180 "positive". HOWEVER- not everyone has a high ratio that has lupus.
I know that you are scared and panicky cause you ahve so much going on and no answers. You have people working on your case- that's a good thing. See if you can break it down. Sometimes writing a list helps calm and organize your thoughts. Like:
lumps
initial diag
doctor working on problem
1st suggestion of treatment
1st action
addl treatment
prognosis
follow-up

Do this for each problem- it may help to see things more clearly and not feel so overwhelmed. You'll also be able to see where progress is being made.
Your body is a big mystery to the dr- he has to be a detective. He's "hired help" and a member of a team of experts that you've gathered to solve your medical problems.
You are not a victim although you feel victimized and betrayed by your body right now- patient and victim are not the same thing. However patience and patient go hand in hand. :-)
I was just diagnosed with FM in additional to the other diagnoses and am still amazed at how complicated fibromyalgia is. Actually, it is more frustrating to have that because there is nothing in reports/tests/etc that actually SHOW that you have it- it's all subjection and people not experienced with it dismiss FM as a nut-case claim. I have a friend who told me that she had FM last year- I really thought she was just a hypochondriac. Well, I stand corrected now and will be taalking to her this week to apologize for not coming to her aid. My ignorance was not bliss for her!
hugs to you
jeri