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Negative ANA test

Messages
3
I had a severely stressful job that I left almost a year ago. Before I stopped working, I developed insomnia that has continued to this day. I feel as if I am stuck in "fight-or-flight." Even if I do sleep through the night, I always wake up tired. When I mentioned to my doctor that I am so tired there are times I feel like I have the flu (including muscle aches) he suggested that I might have an autoimmune disease such as lupus, chronic fatigue, or fibromyalgia. After the appointment, I went home and read up on all three. When I read about CFS, it was as if I was reading about me. As I had recently had a physical with all normal blood work, the doctor ordered one test, an ANA antibody, which has since come back normal.

I have two questions:
1. Does a negative ANA test mean you can't have CFS?
2. Does anyone have any suggestions on where to go from here?
 

Kati

Patient in training
Messages
5,497
ANA is not a biomarkers of anything. ANA gives a faint indication to reheumatologist as of where to look. But then it can be negative and still you can be diagnosed with a rheum disease. Even Lupus requires other markers, including double stranded DNA and other things for a clear diagnosis.

The diagnosis criteria for ME/CFS or fibromyalgia does not include ANA at all.
Here are a few diagnosis criteria to help you understand MECFS:
http://www.meao.ca/files/ME-Overview-English.pdf Look up p8 of this document.
This is a 12 years old criteria.

then there is the ME International Consensus criteria:
http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf

And mose recently the Institute of Medicine has published a new criteria with new suggestion of name for his illness:
http://www.iom.edu/Reports/2015/ME-CFS.aspx


Some blood tests in our patient population are abnormal, but they are not routinely done by unsuspecting general practitioners. There are a handful of experts around the US who diagnose and then treat, to varying degrees of success. Pacing your activities, resting when unwell, avoiding the big crashes (activities which cause a payback) are all must. But a clear diagnosis is important to rule out other diseases as misdiagnosis is common,

Best wishes and welcome to the forums. If you tell us where you are from we can point you to a nearby physician.
 
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WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
As I had recently had a physical with all normal blood work, the doctor ordered one test, an ANA antibody, which has since come back normal.

I have two questions:
1. Does a negative ANA test mean you can't have CFS?
2. Does anyone have any suggestions on where to go from here?

Some people with ME/SEID have positive ANA but many don't. It is not used to help diagnose ME/CFS/SEID at this time (it might help find a subgroup or subdisease later).

A physical would not include a very comprehensive set of bloods. ANA is a vague test which is used to screen for autoimmune diseases as a broad general category (such as Lupus). However, it is not 100% required for Lupus (or I think for any of the others, either). The use of the ANA is to suggest a category of disease, not to rule in or even totally rule out anything (though many docs will use a negative test as a rule out, though the tests are not as sensitive as they act like they are).

There are many, many diseases in the world and many, many other tests. You should go back to to your doctor and ask them what next, or find a specialist you think can help. You can bring in a copy of one of the papers @Kati listed if you think it will help.
 
Messages
3
Thank you for all your help. Ironically, I found out that I was pacing myself before my doctor had even suggested CFS and I read up on it.

I came to this forum because I wanted more info when I go back to my GP. There was never any explanation of what the purpose of the ANA test was for. All I got was a message on my macine afterwards stating that the test was negative. I looked all over the Internet, but only find almost nothing specific on CFS and ANA tests. I'd did seem like their was lots of references to getting lots of tests down to rule out other issues before CFS is diagnosed.

Kati, to answer your question, I live in Lancaster, CA, just north of Los Angeles.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
There was never any explanation of what the purpose of the ANA test was for.
Best guess based on my docs: if you would have a higher ANA they would do test for Lupus/similar, while if it is low to negative they would assume it is not Lupus/similar. Me with a higher high ANA and no Lupus-specific tests (nor other autoimmune diseases that would make sense that we've tested for) confuses my rheum, as she hasn't read the papers saying ANA can be positive in ME/SEID, and won't look at them if I bring them in. :D My sister's doc said it was normal for ANA to be positive but low in fibromyalgia. I haven't looked for papers on this.

I came to this forum because I wanted more info when I go back to my GP.

What do you need specifically?

The IOM documents Kati mentioned are the newest publications and a GP would find them very credible and very respectable. There is also some information from Stanford; a nice name to throw around in CA.

I'd did seem like their was lots of references to getting lots of tests down to rule out other issues before CFS is diagnosed.

Prior to the IOM definition (which is not yet tested or validated) for SEID, the other definitions used, ME, CFS, and ME/CFS definitions rely on exclusion (ruling out other conditions)--some are better than others (it's well known that many include a lot of misdiagnoses). The SEID criteria is more like the criteria for autoimmune diseases prior to tests being developed: it is a clinical diagnosis based on a hopefully distinguishing set of signs and symptoms (used in a differential diagnosis context like any other diagnosis, just not: diagnose because you can no longer think of anything else it could be). There is not yet an ICD code for SEID, so it is unclear when it could be used in clinic.

However the report should be valuable currently, as it describes all the research up to a year ago or something like that.

I forgot to say before, welcome to the forums. :)
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
Thank you for all your help. Ironically, I found out that I was pacing myself before my doctor had even suggested CFS and I read up on it.

I came to this forum because I wanted more info when I go back to my GP. There was never any explanation of what the purpose of the ANA test was for. All I got was a message on my macine afterwards stating that the test was negative. I looked all over the Internet, but only find almost nothing specific on CFS and ANA tests. I'd did seem like their was lots of references to getting lots of tests down to rule out other issues before CFS is diagnosed.

Kati, to answer your question, I live in Lancaster, CA, just north of Los Angeles.

Welcome to Forum, wish you didn't have the illness though :(

GG