Autoimmunity For Me?

[BFSBurger]

My symptom set has always been indicative of some sort of immune disorder. I've always known that, even though doctors in their infinite idiocy rejected it, because my ANA was always negative.

I was just pouring through some test results to see when my last ANA was, because I feel like I've developed the tell-tale lupus mask, sun sensitivity, and some other symptoms which are remarkably similar to renauds / scleroderma.

I found a test from an oncologist from 2 years ago which was a more in-depth ANA test. Both he and the highly esteemed Dr. Irma Rey at Nova Southeastern University saw this result and said absolutely nothing to me about it at the time. I am literally just now seeing it 2 years later because I keep copies of all my results.

The standard test for Antinuclear Antibodies was negative, but on page 2 you can clearly see it says:

"Although the specimen was negative for anti-nuclear antibodies (ANA), the presence of cytoplasmic flourescence was noted on the HEp-2 slide. Other reactivities such as Anti-mitochondrial or Anti-smooth muscle antibodies may be responsible for this flourescence"

Given my symptoms, it astounds me that two highly esteemed specialists failed to mention this to me as something worth checking out. This is why I hate doctors, and will never just sit back and let them manage my health. They are an inept bunch that is overworked, undereducated, and much of the time unwilling. I am doing my best not to go on a frantic Google-fest right now for the above result, but I did land on a couple sites (including a Lupus site) where they explained that this is indicative of autoimmunity, though its nonspecific as to what type.

Anyone here have any insight on this result? I am prepared to find out I have lupus or scleroderma at this point, so its not going to be the end of my world.

-B-

[Buzznerd123]

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[BFSBurger]

Thanks Buzz.

I got an outstanding response on Phoenix Rising forums too. I typically go there when i want to hear back from folks who are interested in researching and finding out whats wrong with themselves. They've got a ton of knowledgeable people over there.

Similar response. More importantly, this particular result actually comes about due to mononucleosis / epstein barr I guess. Which I do have, and was reactivating as per test results around that time.

[Xina535]

Hey - do you guys mind if I jump in on this, since I have something similar happening? Buzznerd, you seem very knowledgeable about ANAs. I've had positive ANA results since 2012 and I've been in the same boat about doctors dismissing this. I've been to 3 neuros recently, one diagnosed me with plexus neuritis, and the other two said he was wrong, but that I could have something auto-immune, but they are not willing to dive further into it. Like, "Yea, you could have something auto-immune, but here's the door, be on your way now, scooch." One neuro literally said to me when I said, "Well, if you don't think this is plexus neuritis, then what do you think it is or what should I do?" he said, "I don't know either." Then he took blood for lyme disease (results next week).

Also, I said, "what about the abnormal EMG results this neuro who diagnosed me with plexus neuritis?" he said, "Those results could happen to anyone, they don't mean anything."

Yes, he literally said that. I cannot trust him EVER - never going back to him.

My symptoms now are left shoulder stinging pain (bad!), left deltoid/upper arm pain (stinging, deep) with occasional twitching, left painful elbow when I press on a certain point, left clavicle pain (new symptom, only when I touch it), and left forearm (on the inside) twitching (constant hot spot).

My right hand is still "sunken in" around my thumb knuckle, snuff box and a little between the thumb and index finger - seen and acknowledged by ALL my doctors, but none have any idea what it is. The muscles seem to still be there though. Have watched this sink in slowly over the last year. Some sensory feelings, with twitches, and a different pinch grip, that is just off (thumb and index finger grip).

So here are my ANA results, with dates, from Germany. Anyone have any ideas?

May 2012
ENA = negative
ANA-Fluoreszenzmuster (florence pattern?) FLUMUS = speckled
ANA (IFT) = 1:160 (positive)
C-ANCA (EIA) = negative
ANCA (IFT) = negative
p-ANCA (EIA) = negative

Oct 2014 (these originally came back negative, but the lab sent a correction of positive)
ANA HEp2-Zellen (cells) = positive
Pattern = homogenous
ANA HEp2-IgG = 1:160

April 2015
ANA HEp2-Zellen (cells) = positive
Pattern = homogenous
ANA HEp2-IgG = greater than 1:80 (did not specify the value on this report)

There was also another positive result in between 2012 and 2014, but my doctor then just said, "yea, it's positive, but does not mean anything" and I switched doctors, but did not get a copy of that lab report yet.

(PS - I am very happy for you, BFSBurger, that you received a thorough check up and explanation. I am sure you know how valuable and rare that is now-a-days.)

[Buzznerd123]

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[Xina535]

Thanks! Germany is at the forefront? Does not feel like it.
So what about my results with my clinical symptoms?
Any idea what the HEp2 IgG means?

[misterjuanperalta]

HEP2 = Human epithelial type 2 (HEp-2) - HEp-2 cells are currently one of the most common substrates for ANA detection by immunofluorescence.
IGG = Immunoglobulin G (IgG) - IgG protects the body from infection.

[Xina535]

HEP2 = Human epithelial type 2 (HEp-2) - HEp-2 cells are currently one of the most common substrates for ANA detection by immunofluorescence.
IGG = Immunoglobulin G (IgG) - IgG protects the body from infection.

Does that mean mean that my HEP2 cells have IgG antibodies attached to them?
And do you know what infections IgG fights?

[misterjuanperalta]

That's the extent of what I can tell you. Sorry.

[Xina535]

Ok thank you!

[Buzznerd123]

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[Xina535]

OK - a rheumatologist. Thanks! At my primary care doctor today, she saw my immune values and ANA and also thinks something auto-immune is going on. Yesterday, I broke out in a skin rash all over my back and neck area, out of nowhere. It is worse today. The meds I'm taking, I've been on for a while now, so she doesn't think that's the cause. And no new skin products or anything. A sign of immune system whacked out? She wants me to see the skin doctor this week, and she is going to re-order the immune levels in 2 weeks or so, since I stopped taking the cortisone and she wants it out of my system first before ordering the tests again. OR could the rash be from stopping cortisone? Weird stuff....

[Buzznerd123]

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[Xina535]

GOOD IDEA!!!!!!!!!!!!!!

Going to the bathroom at work RIGHT NOW to do this!

Thanks!

[Yuliasir]

I broke out in a skin rash all over my back and neck area, out of nowhere. It is worse today.

As I said before, it could be shingles. If the pain location and rash location is virtually the same, then there are high chances for shingles, as age, pain+rash, localisation and previous varicella zoster infection (chicken pox) support this. But talk to dermatologist or GP anyway.

Shingles actually are really painful. Look if the rash would become blisters, if yes - then chances for shingles are really high. Good thing is that average person has not more than 2-3 attacks per life, most often one