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carpe_bean
@carpe_bean

Posts: 12
Joined: Jul 04, 2017

What can cause ANA titre of 1:2560?

Posted by @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!

REPLY

@johnbishop

Hello @carpe_bean, I’m sorry you are not able to get to the bottom of what’s causing your health problem. You certainly have been through a lot. I’m not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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@johnbishop Ooo, so that’s where to find it. Thanks!

Wow, congratulations on 53 years! That’s incredible.

My husband and I celebrate 20 years next month. Well, 20 years of being together since we didn’t get married until 9 years ago. He always says that all our years together feel like five minutes…..underwater. SUCH a comedian. Your wife sounds like a hoot. A sense of humor is definitely one of the keys to a happy marriage.

I’ll let you know when I find turmeric. 🙂

@johnbishop

Hello @carpe_bean, I’m sorry you are not able to get to the bottom of what’s causing your health problem. You certainly have been through a lot. I’m not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

Jump to this post

Hi @peach414144, I guess I’ve been living under a rock but I had no idea turmeric is such a popular spice. I’m not sure I’ve ever even had it, or at least I couldn’t tell you what it tastes or looks like. We live in Germany, so sometimes it takes some serious hunting to find stuff, but we’ll enlist friends to help. Thanks!

@taterjoy I thought so too, but the tests for the most common antibodies for autoimmune diseases were all negative, which is what made me think maybe it really is viral. Or maybe even bacterial….? She didn’t give us any lab results at my last appt, but they just finally came in the mail. For the first time, my Complement C3c is low (but C4 is fine) and “Bacteria” is 3x elevated. She didn’t mention either of those at the appt, so I have no idea what they mean.

After 8 months of this, I think I’ve accepted I’m on my own to get better here. It’s a relief to have this forum for support. I’m glad to hear you’ve found the forum helpful, and thank you, I hope I feel like myself again soon, too!

By the way, I like your handle. My husband and I are from Idaho originally – the potato state. We have a travel blog called “Two Small Potatoes.” Anything “tater” reminds us of home. <3

Liked by taterjoy

Hello All. So I searched around on Mayo Clinic Connect for a forum on Autoimmune Hepatitis and didn’t find one. Not sure if this is the best place to post this, but if there’s anyone who happens to see this and has been diagnosed with AIH, I’d really appreciate it if you’d be willing to share how you were diagnosed. Thanks!

@carpe_bean

Hello All. So I searched around on Mayo Clinic Connect for a forum on Autoimmune Hepatitis and didn’t find one. Not sure if this is the best place to post this, but if there’s anyone who happens to see this and has been diagnosed with AIH, I’d really appreciate it if you’d be willing to share how you were diagnosed. Thanks!

Jump to this post

Hello @carpe_bean, here is the link to the Autoimmune Hepatitis discussion:

https://connect.mayoclinic.org/discussion/autoimmune-hepatitis-1/bookmark/?ajax_hook=action&_wpnonce=0b6adb382b

John

@carpe_bean

Hello All. So I searched around on Mayo Clinic Connect for a forum on Autoimmune Hepatitis and didn’t find one. Not sure if this is the best place to post this, but if there’s anyone who happens to see this and has been diagnosed with AIH, I’d really appreciate it if you’d be willing to share how you were diagnosed. Thanks!

Jump to this post

Thanks @johnbishop. I’ve been following that thread but didn’t see that any of the folks who commented actually have AIH. I was about to post a question directly to @luserm1 but then saw his recent comment about being diagnosed with something other than AIH. I didn’t think it was particularly uncommon, but maybe I was wrong…?

@carpe_bean

Hello All. So I searched around on Mayo Clinic Connect for a forum on Autoimmune Hepatitis and didn’t find one. Not sure if this is the best place to post this, but if there’s anyone who happens to see this and has been diagnosed with AIH, I’d really appreciate it if you’d be willing to share how you were diagnosed. Thanks!

Jump to this post

Hi @carpe_bean,

I’d like to introduce you to Connect members @atorset, @myminnie @gretagean, @mommynumberone, @avonlady38, @vmbreier, @eroch, @lady1994, @klisa24, @billylin, @lizhope33, as they’ve written about autoimmune hepatitis in various discussions on Connect.

Here are some additional discussion you may wish to view:
– Lupus/ Autoimmune Hepatitis: https://connect.mayoclinic.org/discussion/lupus-autoimmune-hepatitis/
– Sister has auto immune hepatitis:https://connect.mayoclinic.org/discussion/sister-has-auto-immune-hepatitis/

Hello @carpe_bean. I have never used this site before & just joined. I just wanted to ask you if you have been tested for Lyme disease & it's co-infections? Ticks rarely carry Lyme disease alone anymore but a multitude of co-infections like Bartonella, Babesia, Ehrlichiosis, Mycoplasma etc. 6 years ago I knew I had Lyme disease & tested the second week after seeing a bullseye rash – but my test came back negative initially. I was not informed at the time that it would take 3-4 weeks for antibodies to form and to retest or how inadequate testing is and the how over 50% of tests will report false negatives. I also didn't realise that only 20% of people will ever notice a tick bite or actually see a bulls eye rash. For years I researched other diagnoses. My symptoms continued and worsened. This may not at all be Lyme disease but it might be something you want to test for. When I first got Lyme my ANA titre was 1:160. It is now 1:2,560; dense, fine & speckled but on secondary testing no sign of Lupus or RA etc. My symptoms ranged from major major bladder & bowel issues, headaches, neck stiffness, terrible insomnia, night sweats, difficulty thinking, cognitive issues, a diagnosis of autonomic nervous system dysfunction, extreme problems with blood pressure, numbness and tingling down left side, pins and needles in my left eye & extreme joint pain. At this point Dr's thought I might have either Lupus or MS. It was then that I remembered that Lyme Disease is known as the Great Imitator and I went back to basics and my initial instinct that this was lyme. I sent my labs to Igenix in the USA – a lyme & coinfection only labaratory and one of the best and I came back with a high positive both both Igenix & CDC standards. Also positive for Babesia, Bartonella & Mycoplasma. Again, your symptoms could be due to other issues but I just thought I would pass this on as your post reminded me a lot of what I went through. I am not sure where you are located. You mentioned German insurance. I have also tested with Armini labs in Germany for viral and lyme infections and they were very good too. I hope this doesn't end up worrying you and that you are already feeling much better. However, if you are not – this might be something you may want to rule out.

My girl friend has got Polzythämia vera and Morbus Cron. Her ANA T1 is also 1:2560. It is very frustrating because there are not a lot specialist out there. Just a lot of doctors saying interesting or doing tests on her with large bills, and at the end no answers

Hi @stew1971 and welcome to Connect. That must be frustrating not getting any answers for your girlfriend.

I wanted to introduce you to @hchristopher @lisabeans @taterjoy @brie87144 @jewel8888 @steeldove and @carpe_bean who . have experienced not getting any answers.

How is your girlfriend doing? How long has she had this diagnosis?

@zebraclaire97

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

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Hi Claire so sorry to hear of all your ailments. I too have suffered for 35 years with word stuff. I now know it is from Leaky Gut syndrome”. Go research it, and you will find a wealth of information. Pub Med is a great site. I went to an interventional dr and got tested through the Great plains Labarotory. Tests results proved I have overgrowth of Candida Albicans In my intestinal tract and they cause all kinds of health problems like you are describing. Anti fungal medications can help greatly. I took them for three straight weeks and after I felt amazing! Most of my health problems went away! But they came back after two years. The Candida albicans thrive in the body if your PH levels are off. It’s difficult to figure out how to fix the PH levels. Go look into the Candida diet and go from there. I hope this helps you.

@zebraclaire97

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

Jump to this post

Hi yeast or fungus in the body emit toxins and one is called oxalates. They are tiny chemical like razor blades that embed in our tissues and cause pain and inflammation. Go out and get some Kal brand calcium citrate.,crush it and take it, see if in 12-24 hours, your pain subsides. It did for me. I now take it everyday. It binds with the chemical oxalates and they leave your body when you pee them out in your urine. I bet you that it will help tremendously with your pain level. These oxalates are what cause MS and fibromyalgia as well as other pain.

Liked by lioness, beryl, Claire

@sugarboo

Hi yeast or fungus in the body emit toxins and one is called oxalates. They are tiny chemical like razor blades that embed in our tissues and cause pain and inflammation. Go out and get some Kal brand calcium citrate.,crush it and take it, see if in 12-24 hours, your pain subsides. It did for me. I now take it everyday. It binds with the chemical oxalates and they leave your body when you pee them out in your urine. I bet you that it will help tremendously with your pain level. These oxalates are what cause MS and fibromyalgia as well as other pain.

Jump to this post

@beryl very good of you to sure such valuable information to help others ……Thankyou on behalf of these people …..Beryl

Liked by lioness, becsbuddy

@zebraclaire97

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

Jump to this post

Hello @zebraclaire97, I would like to add my welcome to Mayo Clinic Connect along with the other members. There is another discussion where your post may be more visible. I'm tagging our moderator @kanaazpereira to see if we should move this discussion here:

Groups > Autoimmune Diseases > What can cause ANA titre of 1:2560?
https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/

Kanaaz also shared the following links in the above discussion that may be helpful .

Study about the predictive value of antinuclear antibodies (ANA): http://www.sciencedirect.com/science/article/pii/S2211283913000178
Mayo Clinic page about ANA results: http://www.mayoclinic.org/tests-procedures/ana-test/details/results/rsc-20344732

Liked by becsbuddy, Claire

@zebraclaire97

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

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@zebraclaire97 Welcome to MayoClinicConnect! Boy, you’ve got a lot to deal with! I really can’t answer any of your questions or concerns, but I can make a few suggestions. Have you been to Mayo Clinic? Or to a university medical center? I would really suggest Mayo Clinic—everyone here seems to get such good information and answers. I certainly hope ou find out something soon! Becky

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