What can cause ANA titre of 1:2560?

@daisydo - You know your body well and you don’t give up researching and pushing.
I have other autoimmune illnesses and I’m surprised that many physicians in immunology/ rheumatology are not keeping up with new research.
It is surprising that if you look healthy, you can’t have a serious illness.
My daughter lives overseas and knows she has more than one autoimmune illness- celiac disease, but it’s a struggle to get the healthcare system interested enough to put a diagnosis on other symptoms that affect her daily life.
She knows she has to keep pushing!
I wish you well!

@daisydo It's tough enough dealing with an autoimmune disorder. But to hear "but you look fine" "you don't look sick!" can be discouraging and frustrating, especially when it comes from a trained medical professional. I have heard that from doctors and nurses! I was diagnosed in 1988 with Systemic Lupus and have fought long and hard to advocate for myself. For 20+ years they attributed my super high protein levels to be related to the lupus, until an interested dr and then a nephrologist decided to look into it further in late 2014 and found I had a rare kidney disease! Like you said, the damage was done by then.
Ginger

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).

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).

Janet,
Thank you for sharing your experience and insights. I'm so glad you found a surgeon who could help!
I have numbness and painful paresthesia symptoms in my feet and calves that resemble those of goldenrascal in that they greatly increase when I sit or first lie down. Despite the absence of low back pain, I believe I have Piriformis Syndrome and SI joint issues. (Among other reasons, my pelvis is out of alignment.) I have an appointment at the Mayo Spine Center with a physician's assistant, for which I am grateful. However, my concern is if I will receive the care that I need without seeing a physician. My symptoms are disabling and have caused me to take medical leave from my desk job for the first time. In addition, I can't drive any distance because my feet go numb and the painful paresthesia worsens. I expect the Mayo appointment will help, but am concerned if I don't get to see a doctor and it doesn't help, because I don't know what else to pursue.

@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/

I was actually searching for the very links that you provided above. I wanted to show them in my response to this thread, but the system wouldn't let me post them. That's why I had to resort to describing an image search that would reveal the new diagnostic point charts.

It used to be, unfortunately, that sine patients could only be diagnosed upon autopsy, when the massive hardening of organs made the diagnosis unavoidablly obvious. And because we " look so good" we still don't get treatment other than, "take a baby aspirin daily," " sleep with the head of the bed elevated to prevent reflux," "keep your blood lipids down with pravastatin," "keep warm," "take levothyroxin," " use artificial tears frequently," "treat the recurrent uveitis with steroid drops when it recurs," " take physical therapy for the frozen shoulders," and come in every couple years for an echocardiogram and PFT to monitor the pulmonary hypertension and lungs." I really don't call those things treatment.

Meanwhile the internal organ damages still occur, because we "look too good" to give any immunosuppressants to us. And we "look too good" to enroll us in special research studies on sine scleroderma.

It's frustrating, but I guess I should count my blessings that my skin thickening is still limited to puffy fingers, even though there is a lot going on inside.

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?