ANA 1:160 speckled. Is it definitely lupus?

Allergies, blood and immune system
1

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

2

It might be worth asking to be referred to a Rheumatologist/Lupus specialist. It can take some time before getting a definitive diagnosis. Have you been offered any treatment to help with your symptoms? It helps to keep a diary of symptoms you experience, things like headaches/migraine, take photos of anything visible, rashes/Malar, colour changes to fingers, Raynauds, photosensitivity rash, unexplained bruising. If you don't heal well after injuries or can't shake off infections include that.

My symptoms and medical history all pointed towards SLE but was originally diagnosed with Polymyalgia Rheumatica despite being a few decades too young for it likely to be PMR. It took a clued up Rheumatologist to diagnose and put me on the right treatment. Hope you get sorted out soon. Best wishes

3

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.

4

Your ANA and anti-Ro are negative which seems to suggest maybe not Lupus but your symptoms seem to say something maybe autoimmune. They should be taking the weakness symptom seriously. Just a thought, have they suggested a neurologist? It can take a few specialists to get to the answers. My best advice, keep on at them. I was told I was an attention seeker despite having previously ended up with renal failure and in ICU in my first pregnancy. They should repeat the blood tests too, they are notoriously changeable. Diagnosing or saying no on one set of results is a bit premature but unfortunately it's what happens. Please keep searching for the answer, there's a lot of information out there, not all of it from knowledgeable medics. Best stick to the reliable ones. Most of the Lupus groups have good information. There's useful stuff for people who have a range of autoimmune conditions and symptoms. You may get a lot of symptoms are because it's depression when the depression is a symptom not the cause. In the meantime rest when you need rest, eat as healthily as you can. Keep talking, keep asking questions, keep pushing the medical people for an answer.

5

Thank you very much for the advice.

My ANA is positive btw, it is 1:160 speckled.

Yes, I started with a neurologist, when I had MS like attack. We were suspecting MS, with my right side weakness, brain fog, tingling and numbness, needles in hands and legs. They did 2 brain MRI and 1 Spine MRI, completely normal, and the neurologist told me it is probably not MS. At that point they decided to test for ANA and come out positive. 

I don't know how to continue forward. I am sure that I will continue looking for answers, but I don't have plan how.

6

Connective Tissue conditions, autoimmune conditions are hard to nail down. It can take time to track the symptoms. They can change, come and go, you can get different ones at different times. I was given the wrong diagnosis too soon. I had to keep going back saying some of my symptoms just didn't fit. It would have been better if they hadn't rushed it. I'm now paying for prolonged steroid treatment, it's looking like I have AVN in my hip. My blood results shouted out Lupus but I was still treated for PMR despite being in the wrong age group. They focused on my crazy CRP and didn't seem to be interested in the ANA or Anti-Ro, they didn't think to link other medical histories, migraine from pre teens, TPP at 5 years old (low platelets, enlarged spleen), autoimmune conditions in the family. Finding someone clued up on SLE can be difficult as they don't see many people, even fewer of them men, with the condition. Looking for specialists who have an interest in autoimmune conditions, Hughes, Lupus can be as useful as looking at symptoms. Waiting to find out is scary. I was relieved in the end, knowing I wasn't going mad, I wasn't imagining it. I hope you have friends, family, co-workers who can support you. Support really matters when you are going through it.

7

 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

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 some tests or make new ones? 

8

Are you feet cold as well? Raynauds? Did they repeat the ANA test? Your Anti dsDNA is negative but that in itself does not rule out SLE/autoimmune. Checking the key organs is at least a step in the right direction. The RA factor is negative so (layman myself, not a health professional) suggests it isn't Rheumatoid Arthritis, I kept getting that my symptoms might be RA because my mother had it, took 14 yrs to be tested and it was negative. It is frustrating but one positive is they are testing you. It can take some time for a definitive diagnosis to be reached. A lupus diagnosis is made based on the blood test results and the symptoms. My inflammatory results were crazy, my skin and infrastructure soft tissue had suffered by the time SLE was diagnosed. Now I have vasculitis. If your main organs are ok it might not mean you don't have Lupus. At least it means whatever you have isn't attacking them now. Specialists are reluctant to jump in with a diagnosis. Has steroid treatment been talked about? It has it's pros and cons. Wish I could offer a more definitive answer but getting the diagnosis is like a detective story full of complex and hidden clues with a few red herrings chucked in. The autoimmune family is a big one and to add to it people can have more than one AI condition. I have 5 at the last count. If the specialist keeps plugging away they stand a chance of getting to the answers. On treatment, it often takes a while for you to feel the benefit so don't lose heart.

9

They did MRI and Ultrasound on feet and hands. Both feet and hands are swollen and still don't react to medicine.

The MRI showed NO evidence of inflamation, butevidence of Osteoarthritis in both big toes from both feet.

Does the absence of inflamation on MRI means the reason for the swelling is not autoimune? Can MRI miss inflamation?

Can this be RA? It is symetric, both feet and hands...

If it is osteoarthritis, can in be the reason for whole body muscule and join pain?

Should I do MRI in different joints as well?

10

An MRI might not always pick up on inflammation. Mirror image symptoms lean towards RA. Not suggesting it is what you might have but RA and SLE can occur side by side, think it is described as Rhupus.

Have they checked for something vascular going on, with you having swelling? Kidney function? I'm not a medic but my rule of thumb is: red is inflammation, blue is something not getting through.

11

Sorry, Lupus/chemo fog! Meant to add, is the blue colouration 'bruise' colour or cold cyan colour? Osteoarthritis can muck with the blood flow too.

12

Kidney function seems ok, they have tested it.

It is not red. It is not blue per say, only the veins are more visible that gives the blue color I think. It mostly is the same color as the skin and it is not liquid or anything like that, it is just the muscle being enlarged, like it is overused. I will talk to my Rheumatologist again tomorrow, but last time (before the mri) he had no idea.

Should I push for muscule biopsy, if MRI is missing the inflamation?

I am sorry about your brain fog. Hope you will feel better soon!

13

It can be that the inflammation was quiet when you went through the MRI, OA has flares and quiet periods too. It could be Osteoarthritis that is the cause. OA is often thought of as an old age thing but can hit people much younger such as yourself, particularly if you have a physically demanding job, do a lot of running, lifting, I developed OA, wrists, in my early 30s, legacy from pushing wheelchairs, lifting young folks who had complex disabilities. The first GP I saw dismissed my problems as too young for OA. MRIs and xrays do show the damage done by OA. Arthritis when it's active does increase the inflammatory markers.