What can cause ANA titre of 1:2560?

Hello @daisydo, Welcome to Connect. I'm sorry to hear that it took so long to get a diagnosis but happy to hear you were persistent in advocating for yourself to get to a correct diagnosis. Thank you for sharing this information and what helps you with your symptoms. Since you are a new member and are not able to share links for a short period of time, I thought I would share the reference you mentioned of some doctors still using the older criteria for diagnosing systemic sclerosis (scleroderma). Here are two sources that discuss the new criteria.

-- Classification Criteria for Systemic Sclerosis: An ACR-EULAR Collaborative Initiative: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3930146/
-- 2013 Classification Criteria for Systemic Sclerosis: https://www.rheumatology.org/Portals/0/Files/SSc%20Class%20Criteria%20slides.pdf

Do you mind sharing what you were searching for when you found Connect?

I became sick in about 1997 and was discovered to be running an ANA titre of 1:2560. After doing extensive searches of the pubmed.gov database, I came to the conclusion that there are really only two things that ever drive the ANA up that high: lupus and scleroderma. My first doc said I was a lupus suspect, but finally the ANA pattern showed up as anticentromere, which is supposed to be specific to limited systemic sclerosis (limited systemic scleroderma, formerly known as CREST syndrome). That doc left for another state without following up on that clue, because basically, although I had developed puffy fingers, I didn't "look" like I had scleroderma.

The second doc was convinced that I had lupus, even though I knew I did not fit the criteria. What's more, lupus is supposed to depress complement, while scleroderma elevates it. My complement was elevated.

To make a long story short, the docs were still using an archaic set of criteria (from 1980), that did not recognize sine scleroderma. When a worldwide consortium of scleroderma docs finally revised the criteria in 2012, I was finally able to be diagnosed with limited systemic sclerosis (sine type). In this new set of criteria, my puffy fingers played a big part in the diagnosis. But by then I also had Raynaud's, and the typical nailfold capillary changes that could be seen with capillaroscopy. These things together with my anticentromere antibodies gave me 12 points toward diagnosis. Only 9 points are needed for a definitive diagnosis. So, even though I don't "look" like I have scleroderma, I do have it. It has stiffened my heart muscle, giving me left ventricular diastolic dysfunction and secondary to that, pulmonary venous hypertension. I must now sleep on a wedge to prevent gastric reflux. It affects the GI tract, so I alternate between constipation and diarrhea, with lots of flatulence. It has attacked my thyroid, causing hypothyroidism, weight gain, and with that, obstructive sleep apnea. It has attacked my tear glands, causing severe dry eyes. It has attacked my eyes, too, causing multiple episodes of bilateral acute anterior uveitis. I have antiphospholipid antibodies and episodes of livedo reticularis if I get chilly. I am now very careful to stay warm to avoid blood sludging and clots. I have had soft tissue arthritis in my hands, and elbows. Basically tendonitis all over. I have had frozen shoulder, first in the right shoulder and much later in the left shoulder. More recently it has affected my kidneys, putting me into stage 3 CKD. Since the very beginning I have had prickling pain in my arms and lower legs. This neuropathic pain is pretty constant.

So, what I am saying is that even if you don't LOOK like you have scleroderma, you may still have it, and since it's such a rare disease, there are probably still many rheumatologists out there who are unaware of the newer criteria. The newer criteria may be seen by Googling " 2012 scleroderma criteria" and switching to images, where you can see point charts showing how many points each criteria is given. If you don't really fit the criteria for lupus, I'd recommend getting yourself to a major scleroderma center, like at Johns Hopkins (Dr. Laura Hummers) or at Georgetown University Medical center (Dr. Virginia Steen).

Sounds like Lyme to me. I’ve had elevated ANA for years (diagnosed with fibromyalgia and nonspecific mixed connective tissue disease 12 years ago, ANA when I was really sick was 1:1260(?) but always much lower after that) but this last test after I got Lyme this summer now shows 1:2560! If your neck pain is at the base of the skull that’s a good sign it could be Lyme. I did 3 weeks of doxycycline and it almost worked but not completely, so now it flares up. Wasn’t feeling particularly bad at all when my blood was drawn. But…my overall symptoms are more noticeable since getting Lyme, and then the Lyme symptoms flare up and are a bit different, enough that I can tell. The vertigo and paranoia and localized neck pain (which can be meningitis, get checked!) are the more noticeable Lyme symptoms for me. And numbness and tingling which I don’t usually have.
I was bitten by a tick that supposedly doesn’t carry Lyme (dog tick) but that huge bullseye rash and my symptoms are strong evidence to the contrary. If you were to take doxycycline (which works better early on) and you notice a reduction in symptoms that would tell you it’s bacterial—I assume, I’m not a doctor. Lyme tests are notoriously inaccurate so they won’t mean much but could get you started there.
Otherwise check out Curable for pain reduction techniques and info on neurologically learned chronic pain. You can unlearn it! Very cool.
Good luck!

Hi! I was never tested or diagnosed with Celiac Disease. I’ve been seeing a Rheumatologist on a regular basis, but the issue I was having was that they all kept leaving my province for work elsewhere. I finally got a Rheumatologist that stuck around awhile. After several misdiagnoses, he sent my blood work off to Calgary and I finally found out that I have Scleroderma. The issue, I think, is that a lot of autoimmune diseases overlap one another and mimic other diseases. I was 12 years trying to get a diagnosis when all it took was a simple blood test. I certainly hope your daughter gets to see someone soon. Too often, our symptoms are being dismissed and they can make you feel like you are going crazy.

Hi. Your post is old I see but my fourteen year old daughter has the same ANA as you stated and that’s how I found your post. She has many of the same symptoms and doctors chalking it up to anxiety but she has yet to see rheumatologist gynecologist neurologist and cardiologist.. what did you find out for yourself? Have you found any gluten intolerance within yourself? The infectious disease dr said since she is negative for celiac then gluten probably isn’t an issue.. but she has been bleeding longer than 35 days and is anemic and I am awaiting yet more appointments.. thank you for your post.

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

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.

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.

@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?

@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/