High Positive ANA Suddenly Negative - Still Struggling With Symptoms

Hi everyone! I will try to keep this as brief as I can, but it's a long story. I am 24, but have been experiencing medical issues since I was 15. It started out as severe migraines, which blessedly have gone away; however I now deal with a host of other symptoms. These include frequent headaches, memory issues, tremors, numbness and tingling in my limbs, muscle fatigue, coordination and fine motor challenges, intermittent fevers, sweating, and chills, generalized aches and stiffness, irregular heartbeat, joint pain, pain and stiffness when walking, most likely chronic inflammation, anxiety, food sensitivities and stomach pain, dry eyes, excessive day time sleepiness, insomnia and more. These symptoms have made many things in my life a challenge, and I am desperately seeking answers. In 2020, a doctor tested for ANA and it came back as 1:640 (homogenous). It was tested again May 2021, and was up to 1:1280 (homogenous). The third time it was tested in December of 2021, the result just said greater that 1:1280. I was recently sent to a neurologist (who gaslighted me, but I won't get into that) and it was tested a 4th time and all the result said was "negative". I am so thrown off by this, especially because I am not only still symptomatic, but because my symptoms are only getting worse. Being sedentary worsens symptoms, but so does being too active. It's a constant balancing act. This is taking so much from me and I desperately need answers. I have been tested for Lupus, Sjogren's, MS, and a few other conditions which all came back negative, but I know something is wrong. Any ideas on what may cause the ANA to suddenly drop back down? Any insights on what to talk to my primary care practitioner about next? Thanks!

[Melba1]

sorry to hear you’ve been through this. Stories of disbelief by neurologists are sadly not uncommon.

ANA is useful for diagnosis but once you’ve had your positive result (or two positives in the rare cases one is an error) that should count as that box ticked and it shouldn’t be necessary to measure it again.

ANA is not now considered to be a measure of disease activity, many studies show that it can change between positive and negative independent of whatever is happening lupus-wise. Not all doctors know this yet and some may try to say that your disease is in remission (which is ridiculous if your symptoms are bad) or that you didn’t ever have it (even more ridiculous if you had previously positive ANA as you did and other tests/ symptoms and were diagnosed). Especially neurologists who are very focused on bloods…

I’ve had lupus for over 10 years and my ANA was strongly positive at diagnosis but now varies between positive and negative. Completely unrelated to my lupus symptoms. I’ve been in hospital in a big flare and it’s been negative then I’ve been feeling quite well with few symptoms and it’s been positive.

It happens to a lot of people especially over longer times with the disease.

Your symptoms sound very neurological too and the neurological type of lupus is even harder to monitor with autoantibody tests (like ANA and dsDNA) as more likely to be negative than in other organ lupus especially kidneys where the majority of people will be dsDNA positive.

This is quite well known among the more knowledgeable research active doctors but sadly not among all.

Hope you get proper support and some symptom relief xx

[Hidden in reply to Melba1]

Thank you so much for your reply! I learned a ton reading it. So many doctors I have been to want to diagnose me based purely on blood work and “text book” symptoms. Unfortunately my case has been anything but “text book” so I am quickly dismissed. Knowing that an ANA can jump between positive and negative like that is really good to know. Now that is has shown up positive 3 different times I am checking that box and moving on. My symptoms can also be intermittent, and doctors often seem believe that, unless I feel terrible 24/7, nothing is wrong. Many things can make my symptoms worse. These include weather and temperature changes, certain foods, stress, menstrual cycle and more. And sometimes they just strike. Can you tell me more about neurological type lupus?

[Melba1 in reply to Hidden]

Yes I think it would have to be a very large textbook to cover all the 80+ main variations of lupus let alone all the unique ways we often present with symptoms. And a big problem with the old fashioned textbooks/ research is that it rarely actually asked the patients. So the symptoms that were thought not relevant or unimportant (but important to our lives) to doctors or researchers weren’t included or even listened to in some consultations.

I think this is particularly the case with Neuro- lupus symptoms as they’re hard to test for, like you say they often come and go, and not enough is known about them.

The memory issues, numbness, tingling, tremors etc all point very much to neurological involvement but you need a doctor with the right knowledge to help. Many neurologists will say it’s not part of lupus and must be fibromyalgia or a functional disorder but there are too many people with lupus with these symptoms for that to be case. If they come and go with other lupus symptoms, get better with lupus treatment and first came at similar time to your other symptoms that’s quite good evidence it’s part of the disease itself.

Lupus U.K. has funded a study into this and hopefully we’ll see the results quite soon so we (and the doctors!) can see how many have these symptoms and get them diagnosed and treated correctly.

The good thing is that they often respond well to lupus treatments x

[Loopyloo43]

hi I have only vet had 1 positive ana test and that was 20 years ago but still has all the symptoms and was treated for this you may well find it maybe negative for a while good luck though ❤️

[KayHimm]

I agree with everything Melba1 said. Your ANA has been positive three times already! They could be re-testing that and hoping other antibodies will give more clues. Labs operate differently.

Where do you live? There are neurologists who specialize in brain autoimmune disease. You are a perfect patient to be evaluated at a place like that.

Don’t give up. You sound very symptomatic. Neurological stuff is really hard to diagnose, even for the best doctors.

Keep coming here for support.

Xx

[Hidden in reply to KayHimm]

Thank you for your response and support. It has been a long, and very difficult journey so far. Despite being very symptomatic, blood tests have failed to show any more specific antibodies, and just give us little hints on what directions we may want to go next. I am located in Mississippi. Good healthcare is, unfortunately, pretty limited around here as well. I am generally very symptomatic. Thankfully I am have been feeling better for the past couple of weeks (I am always thankful for these moments), but know that another flare-up is inevitable. I will definitely keeping coming here for support. =)

[KayHimm]

Would you consider seeing a rheumatologist at the university hospital in Jackson?

[Hidden in reply to KayHimm]

Possibly =)

[MusicalFurbaby]

Hi BrooklyneM, wow you have been through a lot! I wouldn’t worry too much about the negative ANA; as others here have mentioned, it can oscillate between positive and negative all the time and is in no way representative of your actual symptoms. Some of my blood markers, which have tested positive for years, recently came back negative. Doesn’t mean the initial blood result was wrong or anything, it just means our bloods can fluctuate.

Your symptoms sound very neurological to me. You’ve probably heard this already, but how about looking for a better neurologist—one who doesn’t do the gaslighting? I’ve had to search around quite extensively for good specialists in Australia, and it’s worth it to find someone who is truly on your side. At the very least, you could say you’re seeking a second opinion, which is probably a good idea anyway. ☺️🌻

[Hidden in reply to MusicalFurbaby]

Hi! I definitely agree that I need find a good neurologist, as well as other doctors. =) We are constantly seeking for those who will listen to me. I definitely refuse to give up. I know what I am going through, and that there are answers for me somewhere. =) I have found a lot of comfort knowing that blood results can fluctuate. This helps me understand my ANA and other results much better. I agree that a second opinion needs to happen. =)

[MusicalFurbaby in reply to Hidden]

Glad you’re finding reassurance on here, especially about the bloods. 😀 Would be great if someone told us all this upfront! All the best with the seeking. Feel free to post updates here!

[Hidden in reply to MusicalFurbaby]

Thank you so much! 😃

[KayHimm]

Ask for the neurologist’s consultation letter to your GP. There may be helpful information in it. Sorry it was a bad appointment but he may have provided insight that you need.