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Posted By : Pepe Silvia - 7/6/2017 4:07 PM
Hi folks,

I was hoping to get some feedback from knowledgable patients about whether I should pursue a positive ANA result with a rheumatologist.

I went to my GP because I've been feeling just terrible lately, mostly with fatigue and terrible brain fog/cognitive difficulties, occasional low grade fever (like 99 degrees). I'm a research scientist by profession, so the brain fog is especially troubling to me. I need to be able to articulate complex thoughts and ideas to do my job, and I've really been struggling with it recently.

I've had a lurking suspicion for a while that I might have an autoimmune disease such as lupus. My father had autoimmune glomerulonephritis that contributed to his passing away. I've had lots of skin troubles over the years - many rashes, including a hot, red face rash that comes and goes, and pressure urticaria (hives that form when I apply pressure to my skin, like from crossed legs). I also have a ton of antibiotic/medication allergies, which I've been told by doctors could be a sign of autoimmunity.

Anyway, GP ordered blood tests and I had a positive ANA with dual pattern (homogeneous pattern with 1:160 titer and few nuclear dots pattern with 1:320 titer). However, all of the specific antibody tests were negative. These tests were for: DS, SM, RNP, SM/RNP, Chromatic (nucleosomal), SSA, SSB, SCL-70, Jo-1, Centromere B, and Ribosomal P.

I followed up with my GP, and he was very dismissive of the possibility that I could have an autoimmune disorder. His words were that there was "no evidence" of that, despite the positive ANA, family history, and symptoms. He suggested my fatigue was due to stress, and I left feeling pretty stupid.

Is it worth trying to get in touch with a rheumatologist, or is this probably nothing? I'm kind of tired of feeling crappy all the time, and of course fear that I could be ignoring something serious, after watching my father's health decline from autoimmunity.

Other tidbits: I am 30 years old and female. No other health problems aside from some autonomic oddities (orthostatic hypotension, IBS, functional dyspepsia).

Thanks so much.

Posted By : Lynnwood - 7/6/2017 8:39 PM
Yes, you should see a rheumatologist. Although well-meaning, the truth is that GP's are not educated in how to detect or diagnose auto-immune diseases.

If you want to further convince yourself of the need to do this, check out the link to Diagnosing Lupus in my signature below.

Not everyone presents with initial fatigue and cognitive dysfunction, but I did (while finishing research for PhD in high-tech area), so I know exactly what you are talking about. Thankfully, I had a GP who wasn't afraid to refer me on to a rheumy.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Pepe Silvia - 7/7/2017 12:33 PM
Thanks a lot for your reply, I really appreciate it. I think I will make an appointment with a rheumatologist. Sometimes it's really tough to go to the doctor with vague symptoms like "fatigue" because they tend to just dismiss you as a hypochondriac or malingerer (and I think they do it even moreso to women). It's embarrassing. I was actually kind of hopeful about the positive ANA test because I felt like with something abnormal in my bloodwork, the doctor would actually believe that I felt bad and wasn't just "stressed" or whatever. But my GP seemed to think the positive ANA was meaningless since the other antibodies were negative. I think I probably don't meet the diagnostic criteria for lupus right now, but I felt like my doctor was kind of waving it away too quickly, especially given family history.

It sounds like it's prudent to get a second opinion from a specialist.

Thanks again!

Posted By : Upstater - 7/7/2017 1:44 PM
I agree...see a rheumatologist. My primary - who is lovely - kept saying "healthy people can have an elevated ANA". But my dermatologist pushed me to see a rheumatologist. It took more than one, as the first one I did not care for, the second was convinced I had psoriasis, but the third at a major center indicated that I definitely had an autoimmune/connective tissue disorder - although it is considered undifferentiated (UCTD). She prescribed Plaquenil, which I understand can prevent disease progression, as well as treat fatigue (which I really don't have), pain (I do have some mild pain) and skin issues (have had rashes and was diagnosed with discoid lupus from skin biopsy).

Other than 1:320 speckled ANA, the only other abnormalities have been a positive RNP - though also negative twice, positive antiphospholipid antibody, and once positive and once negative rheumatoid factor.

Posted By : Diamond20_UK - 7/7/2017 4:19 PM
Pepe Silvia said...
Hi folks,

I was hoping to get some feedback from knowledgable patients about whether I should pursue a positive ANA result with a rheumatologist.

I went to my GP because I've been feeling just terrible lately, mostly with fatigue and terrible brain fog/cognitive difficulties, occasional low grade fever (like 99 degrees). I'm a research scientist by profession, so the brain fog is especially troubling to me. I need to be able to articulate complex thoughts and ideas to do my job, and I've really been struggling with it recently.

I've had a lurking suspicion for a while that I might have an autoimmune disease such as lupus. My father had autoimmune glomerulonephritis that contributed to his passing away. I've had lots of skin troubles over the years - many rashes, including a hot, red face rash that comes and goes, and pressure urticaria (hives that form when I apply pressure to my skin, like from crossed legs). I also have a ton of antibiotic/medication allergies, which I've been told by doctors could be a sign of autoimmunity.

Anyway, GP ordered blood tests and I had a positive ANA with dual pattern (homogeneous pattern with 1:160 titer and few nuclear dots pattern with 1:320 titer). However, all of the specific antibody tests were negative. These tests were for: DS, SM, RNP, SM/RNP, Chromatic (nucleosomal), SSA, SSB, SCL-70, Jo-1, Centromere B, and Ribosomal P.

I followed up with my GP, and he was very dismissive of the possibility that I could have an autoimmune disorder. His words were that there was "no evidence" of that, despite the positive ANA, family history, and symptoms. He suggested my fatigue was due to stress, and I left feeling pretty stupid.

Is it worth trying to get in touch with a rheumatologist, or is this probably nothing? I'm kind of tired of feeling crappy all the time, and of course fear that I could be ignoring something serious, after watching my father's health decline from autoimmunity.

Other tidbits: I am 30 years old and female. No other health problems aside from some autonomic oddities (orthostatic hypotension, IBS, functional dyspepsia).

Thanks so much.


Hi Pepe Silvia,

I have to quote people because of memory loss rolleyes

Like other members have stated you need to see a Rheumo as alot of GP don't deal in what rheumo's do and mine alone won't mess unless a letter is stated from my rheumo.

If you have a positive ANA then further tests need running plus theses you mentioned besides (orthostatic hypotension, IBS, functional dyspepsia) are also autoimmune diseases.

I got that worried with my brain fog that i mentioned to my neuro about Alzhimers but was told having nerve damage can cause these combined issues.

Posted By : Lisabeans - 7/12/2017 8:43 AM
Definitely see a rheumotologist. I saw my primary with joint and muscle pain throughout my entire body. I also have ulcerative colitis (in remission) and migraines. My ana was positive 1:160 homogenous pattern. All other tests have been negative. My primary told me to see a rheumotologist right away and even called to get me in sooner so I would not have to wait 6 months. I am still undiagnosed and am seeking a second opinion tomorrow. You know your body better than anyone so if you are having any issues plus a family history, you need to seek additional help. Good luck and keep us posted.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Pepe Silvia - 7/15/2017 6:07 AM
Thanks for your feedback, everyone. smile You've convinced me that I should see a rheumatologist and I'm not being silly to do so. I'll make an appointment ASAP.

Posted By : Diamond20_UK - 7/15/2017 3:54 PM
Good luck Pepe Silvia and don't get being put off and please update we smile

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