ANA 1:160 speckled. Is it definitely lupus?

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

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

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

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).

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.

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.

I agree Beave

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

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

@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,

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.