Question re: ANA results

[aimossy]

They may even find after research that the ANA could be clinically insignificant in ME/CFS who darn well knows - but this is the most annoyed I felt about anything so far apart from PACE and lack of research in general. Feeling ripped off.

 

[justy]

People can be perfectly healthy and have a raised ANA and raised ESR though @justy

yes, that may be, but that is my point - we are clearly not perfectly healthy. A raised ANA etc when the person is not ill is not an issue. the issue is when you have these markers and are terribly ill, suffering endlessly, and then told 'oh healthy people sometimes throw thse up' grrrrr - we ARE ill!

 

[aimossy]

Oh - yeah sorry I understand. I found it infuriating that part of it. How can it be possible to be this ill and not have these markers mean anything and its not as if they bother checking all the possibilities. I guess what I meant was how can they be really meaningful markers when healthy people have them elevated. Its like so if they don't mean anything then why have people be excluded in research due to them being elevated. Its a rotten catch 22!

 

[daisybell]

I think the whole thing is a muddle. That is why I am cautious about trying to pin down diagnostic criteria before we have any rationale for such criteria. I don't think there is one special causal process called ME. I think there will be many and if one allows Sjogren's and CREST to come under the umbrella they are two already.



I am not sure why one would add a diagnosis of ME to a diagnosis of CREST because CREST can probably produce most of the symptoms people call ME. If you have ME symptoms you are clearly not asymptomatic - but I know a lot of physicians who re not terribly logical about this.

But what if I only have a few obvious symptoms of CREST, and yet I have lots of symptoms of ME such as PEM? Is it that positive ANA results are actually not well understood in terms of symptomatology, or that labels have been applied without sufficient understanding? I think that without the ANA results, I would not find a rheumatologist who would diagnose the CREST on clinical signs, but I would be much more likely to end up with a diagnosis of ME or even fibromyalgia - as both have been bandied around in my medical notes. The problem is then that once the ME label is given, you become an untouchable....

 

[Jonathan Edwards]

But what if I only have a few obvious symptoms of CREST, and yet I have lots of symptoms of ME such as PEM? Is it that positive ANA results are actually not well understood in terms of symptomatology, or that labels have been applied without sufficient understanding? I think that without the ANA results, I would not find a rheumatologist who would diagnose the CREST on clinical signs, but I would be much more likely to end up with a diagnosis of ME or even fibromyalgia - as both have been bandied around in my medical notes. The problem is then that once the ME label is given, you become an untouchable....

I don't want to get to involved in your individual case without knowing all the details but I suspect PEM is a common feature of fatigue associate with a number of ANA associated syndromes. Fatigue can be the most prominent feature of speckled ANA syndromes. The link between the ANA and symptoms is not well understood but often it is not really considered that teh antibodies may cause fatigue directly, which I suspect they do.

 

[Gingergrrl]

I wish I could quote and reply in detail but I do not have fatigue or PEM in the traditional sense that most describe with ME/CFS even though I have been given this diagnosis by a top specialist.

At present the label is not important to me vs. that I have multiple auto-antibodies including one very rare one, now the speckled ANA pattern 1:160, mononeuropathy/ injury to phrenic nerve, Hashimotos, POTS, MCAS, and drastically impaired breathing/restriction when I inhale a breath, stand or try to walk.

I also have a very vindictive doctor sending out letters that my case is psychosomatic vs. my other doctor (who is a true God-send) refuting his claims and fighting to get me treatment. I will be having a fluoroscopy test of diaphragm as soon as this can be arranged. Am hoping to do IVIG and later RTX (with all needed MCAS precautions in place.)

I wish I knew how to fit all of these pieces together and am pretty sure I do not have lupus which is where traditional docs stop looking.

Thank you to everyone who responded and in 5-6 days I will have regular computer access again which had made this situation extra maddening!

 

[Kati]

Hi @Gingergrrl,

You have a lot on your plate and not getting access to internet, your contact to the world is frustrating, I understand.
You have pressing health care needs, which includes major organs/systems.

You need to take a perspective on the ANA issue. Some people like me have had this positive ANA likely all our lives. Oftentime, it is a confounding factor and confuses physicians (and patients) more than anything else. If lupus has been ruled out then it might be best to address the most pressing issues with the physician(s) who are most helpful and willing to work with you. They will keep the ANA in mind in the context of your very complicated issues.

It has been my experience that ANA titers sometimes fluctuates but does not reflect the severity of illness at least in my case. It is not necessarily a biomarker that needs to be tested every 3 months either.

 

[Gingergrrl]

Thanks Kati and lupus not ruled out yet but am 99% certain that it will be. My actual concern is not that the ANA itself is dangerous vs. what it might mean in relationship to my weird rare auto- antibodies like the calcium channel auto-antibodies and a few other more common ones.

Am no longer at hotel b/c my MCAS reactions were really getting worse and cannot risk deteriorating to where I was last summer when I am so close to getting treatment. Was not able to eat any food today. Am at my parents house for the next 5-6 days so I have kitchen and way to prepare food that is safe without anaphylaxis risk and reached the point I had no alternative.

Will see the rheumy next week and if nothing else, will get the blood test results explained to me. This thread has been helpful in learning that some with ME/CFS have abnormal ANA titers like me and some don't. Basically my medical condition remains clear as mud LOL.

Thanks to Dr. Edwards and everyone who responded, much appreciated.

 

[Kati]

Thanks Kati and lupus not ruled out yet but am 99% certain that it will be. My actual concern is not that the ANA itself is dangerous vs. what it might mean in relationship to my weird rare auto- antibodies like the calcium channel auto-antibodies and a few other more common ones.

Am no longer at hotel b/c my MCAS reactions were really getting worse and cannot risk deteriorating to where I was last summer when I am so close to getting treatment. Was not able to eat any food today. Am at my parents house for the next 5-6 days so I have kitchen and way to prepare food that is safe without anaphylaxis risk and reached the point I had no alternative.

Will see the rheumy next week and if nothing else, will get the blood test results explained to me. This thread has been helpful in learning that some with ME/CFS have abnormal ANA titers like me and some don't. Basically my medical condition remains clear as mud LOL.

Thanks to Dr. Edwards and everyone who responded, much appreciated.

Sending best wishes with the rheumy, I hope he/she is a competent and personable one. It certainly makes sense to systematically rule out things.

 

[knackers323]

What treatments are given to those with a raised ana level both with and without an actual autoimmune dx?

Has anyone tried any of them?

 

[paul80]

@justy
How do you get this ANA test on the NHS? Is it an immunologist you get sent to?

 

[justy]

@justy
How do you get this ANA test on the NHS? Is it an immunologist you get sent to?

My GP did the tests as there was some concern as I had joint pains etc - ANA tests can be done by GPs or by rheumatologists.

 

[Gingergrrl]

Realized never updated this thread but the rheumy completely dismissed my positive ANA titer of 1:160 speckled pattern as either "normal" or a "false positive" and would not treat me in spite of the autoantibodies and how sick I am.

I was shocked but shortly after I found my new Neuro who in conjunction with my ME/CFS and mast cell doctors agreed these tests are not normal and need to be treated. So am now waiting to see if my insurance will authorize what they are asking for. But rheumy was utterly useless.

 

[knackers323]

@Gingergrrl what treatment are they suggesting? ive had fluctuating ana levels that have been as high as 640, the last time I had them they were 0. they high levels were dismissed by my so called drs also.

if every test that is abnormal, they dismiss as irrelevant or false positive or meaningless or any other excuse they can come up with to avoid making an effort to look further into it. why do they bother doing them at all?

if we are telling them that we are as sick as we are then surely some of these abnormal tests must mean something. I think a lot of the negativity and unhelpfulness we face is due to egos being unable to admit they don't understand, laziness to put the effort in to try work it out and greed, as in the time it would take to deal with us, they can see and bill multiple other patients with simple issues.

ive seen a few other drs lately for things totally unrelated to cfs and as soon as I mention 2 issues in the one visit, every single one of them has gotten annoyed. how greedy are they? they first issue took under 2 minutes to print out a referral.

so they think its right to charge a person $50 for 2 minutes, and get annoyed if they are asked to go beyond that. what a joke. says a lot about the quality of person they are and their motivations

 

[eastcoast12]

I have heard of people who sometimes have positive ANA results and other times do not. And have also heard of with and without speckled patterns.

I have had both. Positive ANA. Then positive ANA with speckled pattern, forget off the top of my head but the levels were a few hundred as well as positive RNP, levels were a couple hundred. Then retested Recently (few months ago) both came back negative.

 

[Gingergrrl]

@knackers323 and everyone's questions that I missed (please forgive my slow responses!), my positive ANA of 1:160 speckled pattern was completely dismissed b/c I was negative on all lupus markers. However I am positive for n-type calcium channel autoantibody which several docs think could be wreaking havoc on my autonomic system and causing autoimmune issues.

My ANA had been negative (under 1:40) for many years and now I have the VGCC calcium antibody plus three others along with the positive ANA but b/c not lupus etc, the rheumy dismissed me. And one of my best friends has lupus and was incredibly ill a few years ago so I know how serious it can be but don't understand why other things are also not taken seriously?

The original doc suggested IVIG, plasmapheresis, immune modulators or immune suppressants but then retracted everything and referred me to someone else (I am certain b/c my case was too complex for him b/c I also have MCAS, POTS, and severe breathing difficulties).

He had me do an EMG to rule out LEMS and even though it showed an abnormality with my left phrenic nerve, this was also dismissed as "normal" or as a "technical error" as soon as LEMS was ruled out. (LEMS can correlate with my antibody which is why they checked for this and also for lung cancer which is the #1 thing it can correlate with but I was negative.)

So the long winded answer is that everything abnormal was dismissed and the proposed treatments were denied. But my main doc completely disagreed and felt it was all abnormal, was all related, and was all serious so he applied to my insurance to get IVIG and we are still waiting to hear back.

If we can find a way to get it approved, IVIG will be the first treatment I try in the hope of modulating my immune system and all these autoantibodies. Depending how it goes, my second goal is RTX to wipe out the Ab's at the production stage. No docs will do plasmapheresis so not an option for me and hardcore immune suppressants too dangerous IMO.

So if I can make this happen, my plan is 3-4 months of IVIG and later RTX. I am certain I can make it happen but it is just a very slow process with many roadblocks. Hoping this answers your questions and feel free to ask me more but it might take me a few days to respond!

 

[Strawberry]

@Gingergrrl I didn't see this thread before, glad you updated it! Strange that I used to think we were so vastly different... I have had low titre ANA speckled pattern for years, showed up on blood tests 3 times. Lupus ruled out. Also @justy . Maybe we should form a club!

 

[Gingergrrl]

@Gingergrrl I didn't see this thread before, glad you updated it! Strange that I used to think we were so vastly different... I have had low titre ANA speckled pattern for years, showed up on blood tests 3 times. Lupus ruled out. Also @justy . Maybe we should form a club!

Yes, I am certain that the positive ANA means something once you get to 1:160. It cannot be a coincidence that I was always negative and now I have all these different autoantibodies plus the positive ANA titer. Am not sure why autoantibodies are dismissed just b/c they are not lupus but that is the current mindset amongst most doctors. Luckily my main doc disagrees with this and is still trying to get me treatment and hoping I can start it soon.

 

[Strawberry]

Yes, I am certain that the positive ANA means something once you get to 1:160. It cannot be a coincidence that I was always negative and now I have all these different autoantibodies plus the positive ANA titer. Am not sure why autoantibodies are dismissed just b/c they are not lupus but that is the current mindset amongst most doctors. Luckily my main doc disagrees with this and is still trying to get me treatment and hoping I can start it soon.

I will have to go look up my titre, I can't remember what it was. And maybe get it tested again.

 

[Dmitri]

I had an ANA of 1:160 and speckled pattern. The physicians who reviewed it assured me that I don't have any autoimmune disease after the blood test results for specific ones came back negative. My symptomatology, as well as the fact that family members have Sjogren's, put me in a confusing position.