ANA 1:160 speckled. Is it definitely lupus?

Do I have it?
0
Yes - 0.0%
1
No - 100.0%

 
New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

amafi
New Member


Date Joined May 2018
Total Posts : 7
   Posted 5/21/2018 11:09 PM (GMT -6)   
I am 29, white male. After severe symptoms, my neurologist sent me to do ANA and it turns out positive, 1:160 speckled. They automatically did Anti dsDNA (negative), Anti nRNP/Sm < 2.0 , Anti Smith < 2.0

Symptoms include:

- Weakness/sensitivity on the right side of the face and right side of the body. Pain and sensitivity in the right eye.

- Feeling less conscious (like between dreaming and reality)

- Difficulty thinking, concentrating, sometimes difficulty typing and speaking.

- Full body muscle pain

- Almost constantly tired

- Nausea

I am so scared. I would appreciate your help / feedback.

After whole day of searching, I have yet to see such results with negative lupus

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 5/21/2018 11:54 PM (GMT -6)   
Sorry you are experiencing issues and feeling poorly, hopefully your specialist can figure out what is going on. None of us here are doctors or medical professionals so we cannot advise if you definitely have lupus. That said I can say that lupus is not diagnosed based of a positive ANA,
There are 11 criteria that are Lupus Criteria: According to the Lupus Foundation of America

Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.

The “Eleven Criteria”

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

amafi
New Member


Date Joined May 2018
Total Posts : 7
   Posted 5/22/2018 12:29 AM (GMT -6)   
Thank you very much for your answer.

1. Malar rash: I think NO (based on the pics I see on internet). I have red bumps tho
2. Discoid (skin) rash: I think NO (based on the pics I see on internet). I have red bumps tho
3. Photosensitivity: NO
4. Mouth or nose ulcers: YES, but in the past.
5. Arthritis (nonerosive)L I have muscule and joint pain, but I will say NO, because I never noticed swelling.
6. Cardio-pulmonary involvement: NO
7. Neurologic disorder: seizures YES I think, I had brain stroke scare that turn out to be nothing this January
8. Renal (kidney) disorder: NO
9. Hematologic (blood) disorder: I had low lymphocytes, everything else normal. Does it count? I will say YES.
10. Immunologic disorder: NO, so far
11. Antinuclear antibodies (ANA): YES

From this, I have 4/11 sad

Maybe I misdiagnosed the rash, maybe I have more than 4.

GreenBeans
New Member


Date Joined Dec 2016
Total Posts : 12
   Posted 5/22/2018 9:08 AM (GMT -6)   
With those blood results, you need to see a Rheumatologist for proper diagnosis and treatment.

Your neurologist is NOT the person to treat what might be an autoimmune disease.

Please read the Lupus 101 thread to find a long explanation of ANA and what it does and does not mean.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1739
   Posted 5/22/2018 4:39 PM (GMT -6)   
I agree that you need to see a rheumatologist for proper diagnosis and treatment. That will include review of symptoms and more blood tests.

As it stands now, it's *possible* that it's lupus, but not likely. Positive ANA is non-specific, meaning that it can be from many things: various autoimmune diseases, including but not limited to lupus, or from infection, or from nothing at all. The higher the positive, the more likely it means something. Yours isn't super high, but it's high enough to raise suspicions. The others being negative is good, but there are several other subtypes of ANAs that you didn't list, so I'm assuming they weren't checked (and they need to be for help in diagnosis).

amafi
New Member


Date Joined May 2018
Total Posts : 7
   Posted 5/25/2018 9:47 AM (GMT -6)   
After my immunologist did additional tests, he told me that when ANA is high, especially in men, they want to make additional test to make sure the kidney and other organs are ok. He also told me that I don't have systemic autoimmune disease at the moment. He wasn't that interested about my symptoms.

I will ask for a second opinion. I plan to see reumatologist. They one I saw almost a month ago gave me Lyrica, but doesn't help me that much.

The tests that the immunologist did was:

Anti dsDNA - Negative
Anti nRNP/SM - Negative
Anti SS-A - Negative
Anti Ro-52 - Negative
Anti SS-B - Negative
Anti Scl 70 - Negative
Anti Jo-1 - Negative
Anti CENP B - Negative
Anti Nucleosomes - Negative
Anti Histones - Negative
Anti Ribosomal P-Protein - Negative

RA Factor - Negative

Anti Beta2-Glycoprotein 1 - 12.7 Ref range: (0.0 - 19.9)
C Reactive protein - 0.03 Ref range: (0.00 - 0.50)
CCP - 0.6 Ref range: (0.00 - 5.0)

Complement C3 116.0 ; Ref range: (82 - 185)
Complement C4 22.7 ; Ref range: (15 - 53)
Creatine Kinase 42 ; Ref range (30-200)

Bottom line:
- I still don't have diagnosis
- I still have symptoms (especially fatigue, it is unbearable. I sleep more than 12 hours per day and I am still tired)
- I have a lot of doctors, but little answers. I am treated for irritable bowel syndrome with a lot of medications + the lyrica + some antidepressants I guess.

Should I expect the doctors to make a diagnosis? Should I give them time? Should I accept non-diagnosis? Should I wait for symptoms to get better by themselves?

Please help.I really need it. Any advice will be highly appreciated.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16396
   Posted 5/25/2018 10:24 AM (GMT -6)   
Anyone can have a positive ANA & not have any auto-immune disease. They are used as a marker to rule out many different things too. You may want to consider looking for a board certified rheumatologist & go in for a consult. Take a copy of all of your current testing for the dr to review. It never hurts to get a 2nd opinion. If the 2nd opinion dr does not come up with a diagnosis, it is strictly up to you on pursuing consults. Unfortunately, drs cannot always tell us what is going on. They have to rely on physical symptoms, testing & exams. I do think when seeing specialists we need to give them a fair amount of time to see if the medications are helping. If the medications are not helping then the dr needs to know this. Sadly, we do not get instant fixes, we can only wish for them.

I hope you get to feeling better.
Susie
Moderator in Chronic Pain & Psoriasis Forums

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1739
   Posted 5/25/2018 8:32 PM (GMT -6)   
With those additional blood test results, this is almost certainly NOT lupus.

But it could be lots of other things, or nothing at all. It could be something like fibromyalgia. It could be myositis/polymyositis. Have you had your thyroid checked fully? It could be a thyroid issue.

Long story short, it could be lots of things - but it's very unlikely to be lupus. Look at other possibilities with your primary care doc and your rheumatologist.

GreenBeans
New Member


Date Joined Dec 2016
Total Posts : 12
   Posted 5/25/2018 8:46 PM (GMT -6)   
Only a rheumatologist can tell you for sure that it is or is not Lupus. Lupus and other auto-immune diseases are slippery creatures - sometimes a rhuemy has to try treatment and see how your symptoms react before making a final diagnosis. (For instance, steroids will often help auto-immune diseases, but if it's fibromyalgia, steroids will not help.)

Some of the people that have given you advice here don't even have Lupus themselves! Take this for what it is - anonymous free advice! lol

Lupus since 2000 for me.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1739
   Posted 5/25/2018 9:02 PM (GMT -6)   
green beans said...
Only a rheumatologist can tell you for sure that it is or is not Lupus. Lupus and other auto-immune diseases are slippery creatures - sometimes a rhuemy has to try treatment and see how your symptoms react before making a final diagnosis. (For instance, steroids will often help auto-immune diseases, but if it's fibromyalgia, steroids will not help.)

Some of the people that have given you advice here don't even have Lupus themselves! Take this for what it is - anonymous free advice! lol


lol indeed. So only people with lupus are qualified to discuss lupus diagnostics? Most lupus researchers don't have lupus. Are they not qualified?

Based on the blood test results presented above, in combination with the answers to the eleven criteria, there is practically no chance this is lupus.

You don't need to have lupus to understand that.

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 52
   Posted 5/26/2018 3:46 PM (GMT -6)   
I agree Beave

https://www.hopkinslupus.org/lupus-info/diagnosing-lupus/

amafi
New Member


Date Joined May 2018
Total Posts : 7
   Posted 5/28/2018 1:59 PM (GMT -6)   
Thank you all for your answers.

I understand that the “Eleven Criteria” is the recommended path to diagnosis for Lupus. However, it is very difficult to be sure that you are answering the questions correctly. For example, I have rash on my face, but it is also bellow the nose (pictures that I see on google for butterfly rash are not bellow the nose). Similar things for the other symptoms as well.

My reumatologist doesn't even check this criteria, did only muscle tests and is treating my muscle pain with Lyrica. She mentioned that it might be false positive. But from my research, false positive is very rare occurrence in male below 30. Also my ANA is pretty high, 1:160. It rarely happens to be false positive with this value.

What other tests should I try to make? Is there a way to figure this out?
If I wait, how long should I wait with the symptoms? Should I repeat the ANA test, and if it is getting higher, that might be a sign that it is not false positive?

I feel like I am running out of options and helpless.

Dustmite
Regular Member


Date Joined Jan 2017
Total Posts : 56
   Posted 5/28/2018 5:24 PM (GMT -6)   
I would research rheumatologists in your area and see if there is one who specializes in lupus. Also see what their patient reviews say. In alot of the larger areas there are lupus support groups. You could always go to a meeting and ask about rheumatologist in your area who have a good track record in diagnosing and treating lupus. Keep looking for answers until you are satisfied. In my area there are a few different rheumatologist. My first referral was with a rheumatologist with a reputation of treating his lupus patients with only vitamins. This wasn't the kind of treatment I was looking for. My lupus is killing my kidneys. Vitamins may be a good supplement, but wouldn't do alot to spare my kidneys. Of course everyone is different. Look for a rheumatologist you can ask your questions to. I was given great advice on this website last year after I was diagnoised with lupus. Keep a journal of your symptoms everyday. Before going to your appointments, write all your questions down. Take someone with you to your appointments. You can compare notes after your appointment. Bring your journal with you, especially to your first appointment. I had a month's worth of info on symptoms, joint pain, fevers, daily energy level, questions I may have had that day. For all of your appointments carry an updated medication list. Saves time on any paperwork that has to be filled out. Keep a copy of your lab work and medical records. You can get copies from your doctor's office. Keep a copy of your referrals and number of office visits allowed for each refferal. Something I have learned how to do the hard way is to keep track of when my medication needs to be refilled. Especially checking before my appointment e for meds that need new refills. I have also found it alot easier to use a small pharmacy. The pharmacist gets to know you, the waiting time on filling a prescription is alot faster. Also I only use that one pharmacy. I hope this advice helps you. I hope you find your answers. Keep searching until you do. And be your own advocate. You know your body better than anybody. Speak up for yourself until you get your answers. Good luck to you and God Bless You. Dustmite

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1739
   Posted 5/28/2018 6:27 PM (GMT -6)   
amafi said...
Thank you all for your answers.

I understand that the “Eleven Criteria” is the recommended path to diagnosis for Lupus. However, it is very difficult to be sure that you are answering the questions correctly. For example, I have rash on my face, but it is also bellow the nose (pictures that I see on google for butterfly rash are not bellow the nose). Similar things for the other symptoms as well.

My reumatologist doesn't even check this criteria, did only muscle tests and is treating my muscle pain with Lyrica. She mentioned that it might be false positive. But from my research, false positive is very rare occurrence in male below 30. Also my ANA is pretty high, 1:160. It rarely happens to be false positive with this value.

What other tests should I try to make? Is there a way to figure this out?
If I wait, how long should I wait with the symptoms? Should I repeat the ANA test, and if it is getting higher, that might be a sign that it is not false positive?

I feel like I am running out of options and helpless.


1:160 isn't that high. It's moderately positive. High would be 1:640 or 1:1280. Last time mine was checked it was higher than 1:640 (in between that and 1:1280) - and I don't have lupus. I have UCTD.

Your other test results are pretty clear that this isn't lupus.

It's something else. So instead of focusing on lupus, figure out what else it could be (like I said before, thyroid issues, myositis, fibro, uctd, etc).

As for repeating the test, you can do so every year or two. If you catch it really high one time, it's more likely you have UCTD - still not lupus.

amafi
New Member


Date Joined May 2018
Total Posts : 7
   Posted 5/29/2018 5:11 AM (GMT -6)   
@Dustmite, thank you for sharing your experience. If I have Lupus, probably it is early stage that it doesn't attack anything yet. Doctors can't tell.

@beave, thank you very much for your advises. They tested thyroid (few times this year) and it is normal. They did extensive blood work, for every organ in the body. They did MRI of brain and MRI of spine (because I suspected MS, I had exactly the same symptoms). So far nothing, everything is normal (except the ANA).

I asked my rheumatologist today if I should repeat the ANA test, she said no, because it tents to stay positive for few years at least, and if it show higher value it will just increase my anxiety and will not give them any new information. She decreased my Lyrica to 50mg per day from 75. She want's to check if my muscle pain will still be lower. Other than that, she told me follow up with the neurologist for my neuro symptoms (brain fog, memory problems, confusion, right side of face and body weakness). The neurologist is still monitoring, no pills.

I am in Bangkok, Thailand. The both imunologists/reumatologists are bord certified in USA. They worked in Mayo clinic, so I can't say anything bad about their credentials.

She told me to come back if someone else notices the symptoms (except me), than I should talk to her again. She thinks my anxiety is playing a role.

I don't know how to test for myositis, fibro, uctd. Without existing tests for these conditions, I know they will not diagnose me with anything yet.

I think that I have something in the first stage. Maybe lupus or something else, but maybe it is not possible to tell for now.

amafi
New Member


Date Joined May 2018
Total Posts : 7
   Posted 6/15/2018 7:00 AM (GMT -6)   
In the last week I developed new symptoms, that worry me a lot. Swelling of the soft tissue in the both feet. Now a small swelling start in the hands. The joints are not swollen, I don't have redness, but I have blue color on the feet.

The doctor has no idea why sad

The swelling so far (one week) is not reacting to Celebrex 200mg, 2 times a day and Fastum Gel. Does this makes it more likely to be something autoimmune?

Should I repeat the ANA tests? Should I repeat the ENA panel? How often the result change?

Post Edited (amafi) : 6/15/2018 7:08:35 AM (GMT-6)


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 6/15/2018 11:38 AM (GMT -6)   
Amafi,

Sorry you are still experiencing issues and have new symptoms. Unfortunately we cannot advise you what you should or shouldn’t do, that would totally be up to your doctors. Remember lupus is not diagnosed by a positive or negative ANA.

Hope you feel better soon and your doctors are able to find the root cause of your issues.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

amafi
New Member


Date Joined May 2018
Total Posts : 7
   Posted 6/15/2018 12:17 PM (GMT -6)   
Thank you Melissa. Yes, I understand.

I have seen multiple doctors, they give me different opinions, some say I should repeat ANA, some say there is no need to do that because it tends to stay the same.

I still don't know how to adapt to the symptoms. I spend 90% of my time at home alone, addicted to movies and YouTube as a way to escape reality. It is difficult to spend time with people now, due to confusion and I am distant. It is obvious to other people that I am not Ok.
Does it get better after the diagnosis and proper treatment? Or it is just getting used to the new reality? How do you cope with it?
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, July 17, 2018 6:30 PM (GMT -6)
There are a total of 2,982,557 posts in 327,014 threads.
View Active Threads


Who's Online
This forum has 161834 registered members. Please welcome our newest member, SGTUSMC68.
483 Guest(s), 10 Registered Member(s) are currently online.  Details
Alcie, Jasperilla, sandyfeet, pombear, Michael_T, Qymaen-Jai, Handyman123, Saipan Paradise, sierraDon, k07