What can cause ANA titre of 1:2560?

Posted by carpe_bean @carpe_bean, Sep 18, 2017

Hi everyone,
I got really sick back in January and have been struggling to get a diagnosis or treatment. I’ve read quite a few chat threads on this site for some time but have never posted. I have a question no doctor has been able to answer. Maybe someone in this community might have some insight! In May a doctor tested my anti-nuclear antibodies (ANAs). The titre was 1:2560. I know ANAs can be elevated by autoimmune diseases, cancer, and viral/bacterial infections, among other things. So far, doctors haven’t been able to figure out what’s wrong, despite a host of weird symptoms and irregular tests. My question is: How likely is such a high ANA to be associated with an autoimmune disease? I’ve repeatedly read that the titres caused by viruses and bacterial infections are usually “mild”, presumably <640. Is that true? Doctors have ruled out cancer, they don’t believe it’s a bacterial infection, but a virus is always a possibility. Can chronic viruses like Epstein-Barr cause such a high ANA? Has anyone else here personally experienced that? I’ve seen a handful of doctors, but most have been dismissive and unhelpful. I’m really frustrated. Hopefully someone here can provide some clarification. Thanks!

@JustinMcClanahan

@goldenrascal, welcome to Connect. That was an insightful introduction to the Connect community and participants of the ANA discussion. Also, great points on remaining patient with doctors, even if it feels like they are not listening or passing you off. I have experienced that in my lifetime with my rare disease as well.

@goldenrascal, while we wait for others to share their experience and comment on your experience with your medical journey, I have to ask, what dangerous sports are you in love with?

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Hi Justin,

I’m a horse rider, circus performer and sprint runner. I also use to swim, do ballet, gymnastics and cross country. though not as ‘dangerous’ do cause their own sets of injuries, haha

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@goldenrascal

Hi,
I know it’s been a while since this post was made and I hope you have already found your answers by now.
Sorry for the rant here, this is often something I find myself debating with classmates (nursing student) and friends about.
I understand if no one actually reads this😅.

I myself have an ANA of 1:2560, and share a few of your symptoms.
With a list like that I think you may find you have multiple conditions(same as me), and this is why some doctors will dismiss certain symptoms as they are looking for conditions they happen to recognise more readily or a set of symptoms they believe line up with each other (this will differ between doctors and what they are use to seeing, and can even be influenced by the patient before you).
What you may also find is some of your symptoms will be caused by others, and thus seemingly dismissed by some doctors who aren’t treating them as separate and serious symptoms.
Things such as physical aches and pains are often a result of the body compensating, instead of all being separate issues.
In my case this is that the bridge of my left foot is collapsed and my ankle rolls inwards, this in turn caused my knee to hurt due to the change in weight distribution and my right leg to compensate, causing me right sided pain from my calf to my shoulder and even put my hips out of alignment (it took years to get to this point as I am a terrible patient who puts up with everything until it breaks me haha).

My personal list of symptoms is (the stared symptoms have been diagnosed):
Hot flushes (adrenaline rushes)
Iron deficiency (non diet related)
Abdominal pain, to which I can black out
Fatigue
*Vertigo
*Nausea
Intermittent loss of appetite
*Occasional tunnel vision due to dizzy spells
*Fingers and toes turn blue
Forgetfulness
*Light headed
*Livedo veins
Left sided chest pain
Oedema In ankles
Pins and needles in legs upon laying down
Raised red patches on calf’s and forearms after warm water contact
*Lack of blood flow to extremities
*Pins and needles if I sit down over 10mins
*Lower back pain (old injury)
*Pain between shoulder blades (old injury)
*Left knee pain
*Shoulder pains
Intermittent loss of strength in arms
*Calf pain (both sides)
*Ankle pain (both sides)
One sided temporal pain
As well as my ankles, toes, wrists, shoulders and hips all click as I move

Now while some of these have yet to be explained, I will often only speak to doctors of symptoms which happen in conjunction with each other, as many of these likely have nothing to do with each other.
Any symptoms that happen separately from all others are mentioned to every doctor as these could be related to anything or nothing.
I try to separate symptoms that happen more regularly as well, from the less frequent ones.

I have thus far been diagnosed with raynauds syndrome, scleroderma, silent migraines and a love of dangerous sports.
I have been checked for just about everything any of my doctors/specialists can think of, often what is found is my symptoms don’t line up with my test results and thus we start the cycle again or alternatively, I am called a liar and find a new doctor… it’s been 7yrs since this started and I am only 21.

My main point here is that, while you may feel like doctors aren’t understanding or taking you seriously, they are trying their best and it may just not be the doctor for you (even a bad doctor is just trying to help in their own way, though I do understand there are a few shitty doctors out there taking advantage of people, they are generally few and far between), or perhaps they simply want to rule out something more common before checking for the things you are asking about. Something any good doctor should explain to you before doing.
In my experience most don’t explain anything, which is terrible practise and Should be fixed immediately as it often leaves patients feeling as if nothing is being done to help them and doctors are just trying to steal their money.
I just wanted to put my two cents in, that in my personal point of view (And I don’t expect to be changing minds with this), a vast majority of doctors are simply trying to help, whether they seem like it or not, and is something to keep in mind when you may not understand why a doctor is doing something.
if you feel comfortable enough to do so, ask, and don’t be afraid to get pushy if they avoid the question, even the nurses at the front desk might be able to give you some insight into the purpose of certain tests.

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@goldenrascal Good for you for advocating for yourself. I know you have a long list of symptoms and many have a diagnosis, but please also consider that doctors make mistakes and there are overlapping symptoms that can be interpreted in different ways depending on the specialty of the provider. Doctors can dismiss symptoms they don't understand and only look at what they do understand. Sometimes you need someone to look at the big picture. Patients do have some ability to change their destiny with the choices they make. It can be very easy to categorize your set of symptoms as a specific diagnosis and look no farther, but there can be other reasons that are missed for the symptoms, and there may be a solution to be found if you look outside the box.

You mentioned things that raise red flags to me as possible spine injury issues or physical problems. You did mention the problem with your left foot causing issues …

"In my case this is that the bridge of my left foot is collapsed and my ankle rolls inwards, this in turn caused my knee to hurt due to the change in weight distribution and my right leg to compensate, causing me right sided pain from my calf to my shoulder and even put my hips out of alignment"

and I believe that you are correct that these are related. You can take this a bit farther if you think about how this will affect your body as time goes on. My physical therapist said to me that misalignment of the pelvis affects the knees and causes uneven wear and this leads to knee replacements. So it is important to listen to your body and proactively make changes to try to avoid future problems. The pattern you develop in your body can also create tightness in the fascia and your body gets stuck that way and no longer moves correctly. That can affect a lot of things by compressing nerves and blood vessels. How about seeing a podiatrist and getting custom orthotics to support your foot and stop the rolling inward?

When I look at your list of symptoms, I question that some could be related to your injuries. I know you said many of these have been diagnosed, but you didn't mention any possible spine related diagnoses except for migraines. Pain between the shoulder blades and arm weakness can be spine related or related to thoracic outlet syndrome.

This excerpt can be found in this article https://trainingandrehabilitation.com/treating-migraine-headaches-addressing-atlas-thoracic-outlet/ and it describes how the blood supply to the brain can be cut off because of a misalignment of the top 2 vertebrae right under the skull.

"The true underlying cause of migraines are of course widely controversial, but my own findings are that partial occlusion of the cerebrovascular supply (such as the vertebral artery) or venous outlet (such as the external and internal jugular veins) to or from the brain are the underlying cause of migraines. This means that there is either reduced blood flow into the brain, causing compensatory cerebral vasodilation (vessels distal to the partially occluded site will dilate"

A misalignment of C1 & C2 can also cause vertigo, and I have experienced that myself, and correcting the alignment stopped the vertigo. You are talking about passing out, Vertigo, Nausea, Intermittent loss of appetite, Occasional tunnel vision due to dizzy spells, forgetfulness, being Light headed, and that can be caused by an interruption of the blood supply to the brain.

I would recommend looking at a lot of the articles at trainingandrehabilitation.com because they discuss in detail how these issues can create the symptoms that you describe. Also look at thoracic outlet syndrome. I have that too, and turning my head causes the pulse in my neck to stop. That also happens from raising my arms, if fact, those are the ways that doctors test for this. TOS causes my neck and chest to be too tight on one side which does cause chest pain and ribs that twist, and that tightness extends down to my hips. I have had my pelvis pulled out of alignment and it caused some knee pain and the excess tension causes plantar fasciitis which I have had too. It's like having one leg shorter than the other, but is caused by a pelvis misalignment. A physical therapist can help with that and also help prevent further problems. Clicking joints can signal slight misalignment. My physical therapist also does myofascial release.

When your symptoms change when you lie down, such as it causing tingling in your legs, that can be caused by the change in your spine position, and if there is some instability, the vertebrae might be shifting and compressing the nerve roots that exit the spine that go to the legs. Spine surgeons take images of a patient standing vs laying down to see if the vertebrae are shifting and sometimes it is very significant. The pelvis might also shift when you lay down, and the muscles change position. There could be a nerve entrapment within the muscles around the pelvis that can compress nerve to the legs.

Now think about what happens to your spine as you age. The discs dry out a bit and shrink, and if there has been a prior injury, there may be tiny cracks in a disc that can open up and weaken the fibrous outer layer of the disc. That makes it easier to rupture the disc and it may not take much effort. All I had to do was turn my head, and my C5/C6 disc ruptured and the jelly like substance inside squished into the spinal canal. That was 20 years after a whiplash injury. Within 2 years of the rupture, there were bone spurs pressing into my spinal cord because my body was attempting to stabilize the injury, and I needed spine surgery to stop the damage that was happening and to avoid the risks of paralysis if I should have another injury. Bone spurs grow because of uneven pressure on the end plates of the vertebrae. It took me those 2 years to find a surgeon who would help me. 5 refused and dismissed my symptoms that didn't fit into their expectations of the findings on my imaging. I had pain all over my body, and in my legs and torso that was being caused by the spinal cord compression in my neck, and that was misunderstood by all 5. I found medical literature with a case similar to mine, and I contacted a surgeon at Mayo who helped me, and I had a great recovery that changed my life. ( My patient story https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/ )

If you have not already done so, you may want to consider an evaluation with a neurologist who specializes in spine cases and imaging of your entire spine. If you do consult a spine surgeon, look for one at a teaching medical center who takes the more difficult complex cases because with multiple injuries, you are likely in that category. If you are able to come to Mayo, I would highly recommend it. They have a multi-disciplinary approach to look at all the issues and I found the surgeon who gave me my life back at Mayo. My physical therapist does myofascial release which releases tight tissue and gets the body moving again. It can release tight scar tissue from injuries or surgery. Understanding all of this will help so you can make choices to better your future.

Here are some links that may be of interest. I also included a link to an author who wrote about overcoming autoimmune problems.

Our discussion on myofascial release.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://trainingandrehabilitation.com/treating-migraine-headaches-addressing-atlas-thoracic-outlet/
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
Autoimmune-epidemic
I wanted to share a book by an author who recovered from autoimmune disease. I have not read this book, but I have one of her other books about overcoming life's adversity and how your biography of experience relates to disease later in life. She's an excellent medical writer and has been recognized in her field. Here's the book. https://donnajacksonnakazawa.com/autoimmune-epidemic/

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@goldenrascal

Hi Justin,

I’m a horse rider, circus performer and sprint runner. I also use to swim, do ballet, gymnastics and cross country. though not as ‘dangerous’ do cause their own sets of injuries, haha

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@goldenrascal, I'd like to add my welcome. You're quite right that nurses work with (or compensate for) doctors and often offer great explanations of medical conditions, procedures and follow-up in plain language. With your explanatory post, it is clear that you have chosen a suitable career to study, nursing. You mention that (so far) you've been diagnosed with Raynaud's syndrome, scleroderma, and silent migraines.

You might be interested in these related discussions:
– Raynaud's Syndrome https://connect.mayoclinic.org/discussion/raynauds-syndrome/
– Scleroderma, Limited https://connect.mayoclinic.org/discussion/scleroderma-limited/
– Silent Migraines https://connect.mayoclinic.org/discussion/silent-migraines/

How do you manage your chronic conditions with your studies? What do you find the most challenging and how do you pace yourself?

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@carpe_bean

Hi @lisalucier,

Thank you for responding. I do hope @johnbishop might have some helpful input. I’ve been following the Autoimmune Diseases group you mentioned for a few weeks and have read through many of the discussions. Some of the threads have provided useful info during visits with my doctors here. I haven’t seen much specifically about what can cause ANAs that are that high though.

Geez, I hadn’t intended to go too much into the specifics of the course of my illness simply because of the dizzying array of seemingly unrelated symptoms. Sure-fire way to sound like a loony to a doctor is to list more than 5 symptoms at an appt. But hopefully folks here are more understanding, so here goes!

*Vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun
*Difficulty concentrating and thinking
*Fatigue (not the first symptom, and has improved slowly)
*Difficulty swallowing
*Deep pain in muscles, worst from neck to tailbone and in big muscle of left leg and shoulder
*Adrenaline rushes like the feeling you get when you fall from a plane (Jan – April mostly)
*Back pain around left kidney/adrenal/spleen (constant, horrid burning or sharp pain)
*High blood pressure
*Headaches, usually radiating up from the base of my skull (constant since July)
*Neck pain (constant since July)
*Painful, flaky dry skin rash on right middle finger at knuckle (resolved with prednisilon)
*Insomnia (Jan – April, now resolved)
*Chills and sweats
*Decreased appetite (Jan – April, resolved with prednisilon)
*Weight gain
*Extreme thirst & frequent urination (Jan – April worst, now wake up 1x/night)
*Bloating
*Chest pain
*Super mild intermittent cough, mostly when laying down or in certain yoga positions
*Chronic UTIs, last one took 3 rounds of antibiotics to resolve
*Can’t focus, make decisions, trouble comprehending what I’ve read
*Burning pain in lower back at site of excised lipoma, tail bone, and surrounding area
*Tingling and prickles down left side only
*Wake up and both hands are completely “asleep”, nasty pins and needles when I move them
*Edema? Swollen hands that always hurt and feel stiff

Doctors have ruled out just about everything, really. I asked the rheumatologist today if she thought it could be something like CFS/ME, but her response made it clear she doesn’t believe either of those is a “real disease.” My only other guess is that this is a virus, maybe something like chronic EBV. I was tested for it in March and again in May and both times, the IgM level was 2.2, then 2.1, which was about 4x elevated according to the allowable upper limit for the lab result. My GP at the time said since it was just a virus, I just needed to go home and rest. Since then, every doctor I’ve seen said it isn’t EBV because the IgM level from March to May didn’t change, which means that’s just my baseline.

My husband and I are pretty much at zero here – no idea what to do at this point. If we could use our German insurance to seek medical help in the US, I’d go back in a heartbeat. Or if we could even find a doctor who treated ME or EBV here, I’d try to see them. Unfortunately, the nearest clinic that treats infectious diseases like that is in Berlin, 4 hours away, and I can’t even schedule an appt without having seen a long list of specialists and having had a list of tests. My current GP directly refused to order any more tests at my last appt, and he’s the third GP I’ve seen. The first told me I’m in pain because of “fear” and the second attributed my symptoms to “anxiety.” It’s exhausting and incredibly stressful trying to get help from doctors who clearly think I don’t belong in their office. At what point do you just quit having faith in doctors altogether? At this point I think I might be better off avoiding them altogether and hopefully this nasty thing will eventually just go away on its own.

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Hello. I came across this discussion group and read this post and immediately connected to your story. I wish I could offer a word of wisdom, but unfortunately find myself in the same boat. My ANA titer was very similar. Mine was 1:2580, which is really close to your numbers. I have yet to get an appointment with a rheumatologist so I am in the dark, other than getting a copy of the ANA report and then trying to look to the internet to find some answers. I don't have a diagnosis. My GP suspects Sjogrens Syndrome, with the possibility of additional autoimmune disorders. I am on a six month waiting list to get in with a rheumatologist, so I'm looking at 6 mos to a year to even get in with a specialist. I'm not very good at sitting and waiting, so I look for my own answers until I find answers from a professional. However, hearing your story makes me very nervous that I may never find answers even IF I'm able to get into a specialist.

I am curious about which specific antibodies you tested high on. My report shows very high SSA-52, SSA-60 and SSB antibodies.

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Hi! I have absolutely no idea what specific antibodies I tested high on. I finally got my diagnosis this past summer – limited Scleroderma. In December my Rheumatologist stopped the Hydroxychloroquine and I began taking Jamp-Mycophenolate. I haven’t noticed any difference in my symptoms yet though. I certainly hope you get some answers soon. It’s so sad that we have to wait so long to see a specialist and are left wondering wtf is on the go. If you ever wanna chat just drop me a line.

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@janice76

Hi! I have absolutely no idea what specific antibodies I tested high on. I finally got my diagnosis this past summer – limited Scleroderma. In December my Rheumatologist stopped the Hydroxychloroquine and I began taking Jamp-Mycophenolate. I haven’t noticed any difference in my symptoms yet though. I certainly hope you get some answers soon. It’s so sad that we have to wait so long to see a specialist and are left wondering wtf is on the go. If you ever wanna chat just drop me a line.

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Thank you. Please let me know if you have any results with your new course of meds. BTW – I only know my numbers because I asked for a copy of the lab report. I'm not very good at sitting and waiting. They couldn't very well tell me I couldn't have my own report. LOL At least I can do some research while I wait. I need to feel like I'm doing something. Good luck in your ongoing battle. Thanks. Donna

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