ANA test result negative? 101

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Spunkymonkey
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Date Joined May 2014
Total Posts : 31
   Posted 5/22/2014 11:21 AM (GMT -6)   
I got my ANA test result back from the doctor who said it was at 101, Is this a negative test and is that even a value associated with ANA?

I need some help interpreting this because the nurse just said it was negative.

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 5/22/2014 11:27 AM (GMT -6)   
ANA is usually reported as 1:80, 1:160, 1:320, 1:640, etc. I have no idea what 101 might be.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/22/2014 11:50 AM (GMT -6)   
I believe that they used a new test called an ANA-D where it counts the amount of antibodies not dilutions. 'normal range' is 1-120. They did not tell me they used a new test, I have just been googling it and think that's probably what it is.

I am trying to get a referral to a rheumy but it seems harder than it should be. The rheumy's don't take new patients without a referral.

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 5/22/2014 12:01 PM (GMT -6)   
Well, the ANA-Direct is not new, I've seem it referenced as far back as 2009. Doesn't seem to have become the "standard" yet, that's for sure. Glad you figured out that is what they used.

Not sure how accurate it is - saw one woman report who had ANA 1:1280 (high positive) when the ANA-Direct was negative.

I definitely suggest pushing for a rheumy appt.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/22/2014 8:58 PM (GMT -6)   
The doctors office told me they would give me a referral but that the rheumatoligists over at my local hospital do a triage process of accepting new patients and that it is unlikely since I don't have any "positive" test results.

I also asked if I could please get the actual ANA-FANA, but my doctor is not there on Fridays and Monday is a holiday.

I have decided one of the best things I can do right now is to induce my facial rash, that is stop my nasal steroid spray (my rash is on the bridge of my nose and I think my nose spray may help keep it down) and soaking it up in the mid-day bright sun (we're in a heat wave). Since I left high school and no longer are forced into outside gym class I haven't had as much in the way of the facial rash, so I started today by spending 20 minutes outside at noon in a lounge chair. I came in with a very itchy chest rash that went away after being inside, I was also nauseous after.

It's been 9 hours and my face is beginning to show the rash on my right cheek as a raised bump about an inch long and 1/4 inch wide. It's a small start but I know with the daily soaking in the sun I will get it back out in full force by the end of the long weekend. Then I will book an appointment so that the doctor can biopsy it (which she has never suggested but I think it's the next step as well as getting the proper ANA done).

I really appreciate all the advice you have given me and I hope I can get into see a rheumy eventually whether it's at this hospital or maybe a different one.

Can you advise me on whether my GP will be able to biopsy the rash or should I see a dermatologist?

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 5/22/2014 10:50 PM (GMT -6)   
Normally a dermatologist is the one that does those biopsy's. Mine did mine when we were trying to get me DX'd. I understand your frustration with your doctor and the whole business of getting the referral and such. However, might I caution you, sitting out in the sun like you plan to do, may bring on a lot more than a rash and what you expect.

I've had lupus for 26 years now, it took my doctors 13 years to say yep I have and start treating me. Lupus can mild or it can be very severe. As I'm sure you've seen one of our moderators just received a kidney transplant on Tuesday. We have some folks here who are in what I call a remission and are medication free.

I'd hate to see you spend all the time in the sun to get the rash up in full bloom, and not only that happens, but you put yourself into kidney failure, or something happens to your lungs, or heart. Lupus can affect any organ in your body, plus your joint. I agree fully, that you need to see a Rheumy ASAP, but please be careful this weekend with your plan.

If you start to feel really bad or strange go to the nearest Urgent Care or ER for help. Good luck and try not to get to down over this. Lupus is a tough one to DX and treat times. Hang in there and know we're here for you if need us.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/23/2014 11:22 AM (GMT -6)   
Thank you Barbara for your reply. I have never had a 'severe' flare up and I'm probably in the worst one i've had so far and I would say it's 'mild', I seem to already be flaring just without the facial rash. I believe this rash is my golden ticket and have been urged by several people to not bring it on. I will be very cautious and careful.

I am spending very limited amounts of time outside (as I don't want to get sunburnt or overheated). I spent 20 outside yesterday and about 35 outside today (it's not as hot today and there is a cloud cover so I wanted to make sure I got enough sun) and I'll probably spend some more time out there today. I am vitamin D deficient so the sun will probably help me out there.

I am having very minor joint pains and abdominal pains/back pains. These are not new from being in the sun but rather a month long symptom.

I will be making a dermatoligist appointment at your recommendation, can a derm run the correct FANA? Thanks Barbara and Lynnwood.

Maddi

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/23/2014 11:29 AM (GMT -6)   
I made the appointment, the soonest I could get in is next Friday the 30th at 2:15. This will give the rash plenty of time to show up.

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/23/2014 7:27 PM (GMT -6)   
I know a lot of people discuss having doctors not believe them, but my battle is my parents. My mom thinks my sun rashes are just allergies and the rest is in my head and my dad just ignores any talk of not feeling well/ thinks i'm a hypochondriac. I live at home currently for the summer before I move an hour away again up to college, I have a brother who like my parents thinks it's 'all in my head'.

I've never had a doctor straight up say that but my family thinks so and often voices it. My Mom is currently on the bandwagon of telling me that I have nothing and i'm just wasting their money by getting tests and going to see doctors (of which I've only seen one in the new year and it was just my GP but i have a dermatology appointment scheduled).

The hardest part of having family members who don't think you are sick is when you start to convince yourself that they are right. I've done it many times and I'm trying to stick to my guns this time to see if I can't get a diagnosis or at the very least some medication to help my problems.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/24/2014 12:02 AM (GMT -6)   
My family used to call me a hypochonidriac.
They know I'm sick now, but don't believe I'm that sick.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

tenXmom
Regular Member


Date Joined Jan 2013
Total Posts : 62
   Posted 5/24/2014 1:33 AM (GMT -6)   
I wouldn't bring on a flair intentionally - but I have enough on my own and don't need the extra - I average four hospital stays each year

Her pediatrician and rhumie are pretty sure my youngest has lupus even though her blood work came back fine - Someday we'll get her blood drawn during a flair - I photograph/video EVERYTHING strange on her body - from the halo moles she had removed to her butterfly rash, peeling hands and feet, swollen red knuckles... - She also keeps a journal of how she feels, what's going on etc

I, too keep a journal and typically have three typed pages of strange things when I go to the doctor, even though I'm *lucky my blood tests are never normal

Another daughter is studying autoimmune illnesses at school - she was shocked that yes Mom and her sisters really are sick - at 18 she had to hear it from a stranger to believe it
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/24/2014 2:11 PM (GMT -6)   
I am no where sick enough to warrant a hospital stay, as a matter of fact I've never been in a hospital room for myself before, no broken bones or stitches in my life (I think I have broken my nose and tailbone before but neither required a visit to a doctor).

I officially have some very real sun rashes unfortunately the one on my face is taking quite some time to come up but for the first time that I've ever noticed have have a sun rash on my chest. I'm going to link a picture in another post because I'd like to see if it's what other people have or have seen before. I feel fairly safe bringing on the skin rash, I am already 'flaring' everywhere else and it's very mild but I didn't have any rashes and I really think those will be the ticket in a diagnosis.

The rash is visible and as I mentioned above my family doesn't think i'm sick, but when I showed them the rash they thought I was insane. I will have to fight them all the way to a diagnosis. "So what you're allergic to the sun?" They said very condescendingly. As if I faked the rash lol. I'm like well yes technically I do have a reaction to the sun, it's called photo sensitivity.

Anyway, if you guys would be so inclined to take a look at the post I'm going to make with the photos of my rash, that would be great.

Thanks
Maddi

hannahp
Regular Member


Date Joined May 2014
Total Posts : 22
   Posted 5/27/2014 3:23 PM (GMT -6)   
I'm same as u maddi it's hard it like u have to prove yourself. well no we don't I'd love for my husband to have a crapty week or two to know how it feels chin up girl and take care xxx
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