Find a doctor who will order a "double-stranded anti-DNA autobodies" blood test which is the only truly definitive way to find out if you suffer from Systemic Lupus Erythematosis, or "SLE" or even "Lupus" for short. I too had extremely high titres to both Epstein Barr and ANA. Doctors couldn't diagnose me for six full years. Most doctors don't know about the above mentioned blood test or are hesitant to order it because it's very expensive. So I decided to find out for myself what I had because I knew that something had to be causing my horrific fatigue and aching joints. I went to Emory's Medical Library many times to try to diagnose myself until I found that I must have Lupus after all. My primary Doctor told me I couldn't have Lupus because "I didn't have the right personality for Lupus"! I found an excellent Rheumatologist who examined me and told me he believed I had Lupus and also it's sister disease, Sjögren's Syndrome, for which he also ordered an "SS-A and SS-B titres"for the Sjogren's Syndrome. I had both.
Lupus is a very difficult disease to diagnose because each patient has different symptoms, with profound fatigue as the only Universal symptom, I believe. Sensitivity to sunlight may be another common one but is not true for every person. After being in sunlight, the telltale butterfly, or "discoid" rash can appear on one's face. The rash actually resembles a butterfly and you can GOOGLE photos of it. I wish you good luck in finding an answer. If none of your doctors has done the Double-stranded anti-DNA antibodies test, then by all means, find one who will!!! I wish you the best and pls keep us informed. One last thought:. I went to a different Rhematologist first. He told me I was suffering from Epstein Barr and definitely NOT Lupus. After I found a GOOD Rhematologist, I was sure to send the previous Rhematologist the results of my "positive for SLE and Sjögren's Syndrome" blood test results. He later apologized to me.

I went to see my rheumatologist last month and he's the greatest. He did the routine blood work for my 6month visit. And they called me the next day and said your AHA is higher then before. And the thing is l am very allergic to a lot of meds. So he was going to prescribe me a medicine to suppress my the nerve but l told him he gave it to me before and l.had a reaction. He said what kind l said it had me to use my EpiPen so l didn't get it. And seems like there are many meds for high ANA. So l have to just deal with my problems. I don't know what happens if you can deal with the symptoms. Has anyone had this problem. And l don't know if l can't take some meds because of my liver. Anyone who can enlighten me about this it will be helpful. Thank you

Hi @techi you may have noticed I moved your post to this existing discussion on high ANA so you can connect with others who also have high ANA. Just click VIEW & REPLY in your email notification to get to your post.

I wanted to introduce you to @hchristopher @lisabeans @taterjoy @brie87144 @jewel8888 @steeldove and @carpe_bean as they have experience with this.

What medication was your doctor going to prescribe?

@carpe_bean

Hi @lisalucier,

Thank you for responding. I do hope @johnbishop might have some helpful input. I’ve been following the Autoimmune Diseases group you mentioned for a few weeks and have read through many of the discussions. Some of the threads have provided useful info during visits with my doctors here. I haven’t seen much specifically about what can cause ANAs that are that high though.

Geez, I hadn’t intended to go too much into the specifics of the course of my illness simply because of the dizzying array of seemingly unrelated symptoms. Sure-fire way to sound like a loony to a doctor is to list more than 5 symptoms at an appt. But hopefully folks here are more understanding, so here goes!

*Vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun
*Difficulty concentrating and thinking
*Fatigue (not the first symptom, and has improved slowly)
*Difficulty swallowing
*Deep pain in muscles, worst from neck to tailbone and in big muscle of left leg and shoulder
*Adrenaline rushes like the feeling you get when you fall from a plane (Jan – April mostly)
*Back pain around left kidney/adrenal/spleen (constant, horrid burning or sharp pain)
*High blood pressure
*Headaches, usually radiating up from the base of my skull (constant since July)
*Neck pain (constant since July)
*Painful, flaky dry skin rash on right middle finger at knuckle (resolved with prednisilon)
*Insomnia (Jan – April, now resolved)
*Chills and sweats
*Decreased appetite (Jan – April, resolved with prednisilon)
*Weight gain
*Extreme thirst & frequent urination (Jan – April worst, now wake up 1x/night)
*Bloating
*Chest pain
*Super mild intermittent cough, mostly when laying down or in certain yoga positions
*Chronic UTIs, last one took 3 rounds of antibiotics to resolve
*Can’t focus, make decisions, trouble comprehending what I’ve read
*Burning pain in lower back at site of excised lipoma, tail bone, and surrounding area
*Tingling and prickles down left side only
*Wake up and both hands are completely “asleep”, nasty pins and needles when I move them
*Edema? Swollen hands that always hurt and feel stiff

Doctors have ruled out just about everything, really. I asked the rheumatologist today if she thought it could be something like CFS/ME, but her response made it clear she doesn’t believe either of those is a “real disease.” My only other guess is that this is a virus, maybe something like chronic EBV. I was tested for it in March and again in May and both times, the IgM level was 2.2, then 2.1, which was about 4x elevated according to the allowable upper limit for the lab result. My GP at the time said since it was just a virus, I just needed to go home and rest. Since then, every doctor I’ve seen said it isn’t EBV because the IgM level from March to May didn’t change, which means that’s just my baseline.

My husband and I are pretty much at zero here – no idea what to do at this point. If we could use our German insurance to seek medical help in the US, I’d go back in a heartbeat. Or if we could even find a doctor who treated ME or EBV here, I’d try to see them. Unfortunately, the nearest clinic that treats infectious diseases like that is in Berlin, 4 hours away, and I can’t even schedule an appt without having seen a long list of specialists and having had a list of tests. My current GP directly refused to order any more tests at my last appt, and he’s the third GP I’ve seen. The first told me I’m in pain because of “fear” and the second attributed my symptoms to “anxiety.” It’s exhausting and incredibly stressful trying to get help from doctors who clearly think I don’t belong in their office. At what point do you just quit having faith in doctors altogether? At this point I think I might be better off avoiding them altogether and hopefully this nasty thing will eventually just go away on its own.

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Hi, carpe-bean, although I am primarily a lung and heart patient, a High Resolution CT Scan recently revealed a lot of scarring in my lungs. I was diagnosed with Interstitial Lung Disease (ILD's). My Pulmonologist sent me to a specialist who deals with "rare and unusual I.L.D.'s and lung transplants." He diagnosed me in less than 15 minutes. He looked at the Hi Res CT Scan, asked me a few questions (dry eyes, check, dry mouth, check. Mom had the same but was undiagnosed), looked at my finger tips, which look and feel like little leprechauns have been using razor blades on them, painful and cracked. My diagnosis: Sjogren's Syndrome. (pronounced SHOW-grins). I started taking generic Cellcept, which is supposed to help reduce the inflammation in my system.

Our similar symptoms: vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun, difficulty concentrating and thinking, fatigue, deep pain in muscles, tingling and prickly, worse on left side of body, neck pain, extreme thirst. You may want to go here on the Mayo site and read more about Sjogren's, and see if that's what you might think you might have. I have bought Bausch + Lomb eye drops without preservatives, and still drink tons of water every day, now I know why I've been so thirsty for so long. I understand how frustrating it is to put trust in doctors.

I started going down hill in Sept, been on 40 mg Predisone/day, attempted tapering twice. My Pulm. had me get a regular CT Scan. I went to the appt, he sat there, crossed his arms and legs, and said, "I don't know what's wrong with you." Great. So just keep taking Prednisone until symptoms subside. Well, they never subsided, just got worse. If I climbed a flight of stairs, I was gasping for air like a fish out of water. I emailed my Pulm frequently, telling him how miserable I was. I'm a strong person and have been through a lot, but this "I don't know" business is for the birds. He should have sent me off for testing much sooner. OK, I'll stop my rant. Let us know what you think about Sjogren's. Try to stay strong! Suzi p.s. if you have any of your blood work results, perhaps online with your health care system, you could look for SSA and SSB Antibody counts. SSA and SSB are 2 indicators for Sjogren's. My SSA is negative, but my SSB is a weak positive, 33 units, 20 units being the high end. My ANA Screen is positive, and my ANA Titular ratio is 1:160. Hope this helps!

@carpe_bean

@johnbishop

Hi John,

Thank you! I really appreciate your response. As to why the doctors here aren’t taking me seriously, I think it’s a combination of things. I get a sense that much of it stems from the culture here. I’ve gotten the clear message that I’m no more important than the next patient – in fact, one doctor blatantly said that. It’s just widely known and accepted that wait times for an appt with a specialist or for tests like MRIs are commonly 3-6 months. I’ve noticed that across the board, doctors don’t take a thorough patient medical history, family history, only on rare occasions or if you request it do they take vitals – BP, heart rate, temperature, height, weight, etc, and physical exams are either non-existent or cursory. They just have a completely different approach to medicine.

Prior to January 2016, I wasn’t taking any medications, not even vitamins. In April 2017, a doctor rx’ed Tramadol for pain control and I’ve taken it nearly continuously since then, first with liquid drops (though I was taking 1/4 of the daily amount he rx’ed so it lasted much longer). In June, my GP rx’ed long-lasting Tramadol oral tablets instead to be taken twice a day. I’m currently taking them once in the morning, 50 mg tablets. I honestly am not sure I could function without them, which sucks. Other than that, I’m only taking 20000 units of Dekristol (Vit D) every 2 weeks. My vit D was at about half what it should be back in March, when I started taking it. My levels are now finally back to normal as of this week.

I did check the symptom checker on the Mayo site. I’ve been on there so many times! It really is a good resource, but unfortunately it doesn’t allow searching by lab results. If only I could put in my results for ANas, iron, Complement C3c…those kinds of things. Unless there’s a way to do that that I maybe missed?? I’m afraid I really just need a good doctor.

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Hi carpe diem, maybe you could Google "rheumatologists near me," go window shopping, and read their Google or patient reviews. Good luck!

Examples of rheumatic diseases that might have a positive ANA test include:
1. Rheumatoid Arthritis.
2. Sjogren's Syndrome.
3.Systemic Sclerosis (Scleroderma)
4. Inflammatory Myositis (Polymyositis or Dermatomyositis)
5.Mixed Connective Tissue Disease (MCTD)
6. Overlap of undifferentiated Connective Tissue Diseases.