Negative test results but very positive

[Tessie62]

Hi! I'm new here. First post. I was told to reach out to you the NRAS Community for help.

Here goes-I've seen two or three Rheumatologist, two Orthopedist, and my Nurse Practioner for help. No one can or will help me as long as I continue to produce negative labs. My right hand chronically hurts thus making it impossible to focus and do my job without making mistakes. I got a call today from my Rhuemy telling me they were dropping me as a patient because my labs look so good. Wait! What? That can't be right! I have a chronic low temp, my joints hurt, I was diagnosed with mono last month. That explains why I'm so draggy and the low temps. Since then, I've been battling three infections that took two scripts for each infection to clear. Make that four. I found out last week whilst visiting my eye doc for an eye hemorrhage that I also have a severe eye allergy. I don't get colds, sinus infections or the flu but seem to deal with my share of auto-immune issues. Yet all my test come back negative. I've had positive ANA results in the past but now nada. "Twitchytoes" suggested this could be a Seronegative issue. Any advice or help would be greatly appreciated.

[va972tdw]

Hi Tessie-for year’s I went undiagnosed and told I was healthy and nothing wrong with me. Blood work always and still is negative, but I felt like crap. Due to severe wrist and hand pain finally had doctor do X-ray and MRI and found bone and joint erosion and tenosynovitis so I got Seronegative RA Dx and started treatment.

Have you had any imaging studies of joints? Maybe press for those to dig deeper. I know it is so frustrating, but don’t give up-you know your body better than anyone! Hugs 💗 Tara in the US

[Tessie62 in reply to va972tdw]

Thank you Tara! I have had x-rays. Albeit it's been two or three years. I have Osteoarthritis but this issue is only with my right hand. OA usually mirrors both sides. I won't give up but am running out energy and steam in my quest. Thanks again.

[sharon6768 in reply to Tessie62]

I have OA (both hips replaced and basel joint arthroplasty on both thumbs). When I had the surgery on my right thumb, my hand swelled up and it didn't go down. The pain was so bad I could barely move. I went to a rheumatologist and she had never seen anything like it. She did all the blood tests, x-rays, etc., but everything came up negative. She ordered an ultrasound that showed erosion in my wrist. She prescribed prednisone and that brought the swelling down and thus helped with the pain. After that, it was mtx. I still test negative and my diagnosis is seronegative RA in multiple areas. It has always been my understanding that a good part of a RA diagnosis is the rheumatologist's examine and the picture of your hand tells a story. RA is usually symmetrical and OA in not. Like you, mine is only my right hand. Don't give up. You don't want the disease to progress and ruin more joints.

[suetg3 in reply to Tessie62]

Ask your doctor to order repeat xrays, for comparison with past findings. This may help document disease process, and provide enough information that the RA MD will feel comfortable treating you more aggressively.

Auto immune diseases' are often difficult to diagnose, and leave us fighting for "normal life" while the specialist refuses to look deeper or consider that this disease could be a sero negative inflammatory arthritis.

My previous doctor, whom I really liked, always told me the lab work is only a small piece of the disease process. Evaluating the patient for swelling, pain, joint deformity, range of motion, along with other coexisting disease findings are all part of the diagnostic picture. Unfortunately I had to leave his care due to insurance, and now face an RA doctor who see's lab work as the critical marker-and my sed rate and crp are all normal. never elevated-ever. Suspect my low IGG IGM, and white blood count, low platelets, which are a chronic condition for many years, may contribute to non responsive inflammatory markers.

Good luck on your journey through is maddening disease process. Sometimes I think we are just a $$ for these specialists.

[keeta]

Looks like some form of inflammatory Arthritis. Looks painfull .insist on having an exray .really makes me mad when they don.t use common sense something is obv going on.

Don.t give up lovely .

Let us know how you get on .hugs xx

[Tessie62 in reply to keeta]

Thanks keeta! Doctors are so frustrated with me because they don't know what to do with me. I feel like in imposition the way they put me off. I did a little google search on supplements and false readings. What I found is Biotin can give a negative reading on labs. I actually took all my supplements to my Rheumy in January. He showed no interest and rushed me "in and out". Wuh, wuh!

[va972tdw in reply to Tessie62]

Tessie-where are you in US? I’m in FL and I agree healthcare and insurance sux here! Interesting about Biotin. Prior to testing and diagnosis my hair was falling out in droves, this was 3 yrs ago, since I have been on 10,000 mg Biotin. Wonder if that gave me neg blood readings. Where did you read this? I also had huge weight changes-lost 50 lbs in a year, next year gained 30lbs. Crazy!!

[Barrister]

I have PsA yet have no psoriasis too, but my middle son has severe psoriasis. I also have anti nuclear antibodies but negative everything else and spent 20+ years with joint, neck and back pain and it took for me to be living abroad before I finally got a diagnosis ( although the final PsA diagnosis was made here in the U.K.).

Clemmie

[Nuttyshirlz in reply to Barrister]

Psoriasis skips generations if you look on psoriasis site you see a few ppl have psoriasis arthritis but no psoriasis.Ive had them for about 50 years on and off xx

[Tessie62 in reply to Barrister]

I feel your pain Clemmie! I'm tempted to go abroad and visit a team of doctors that won't turn their back on a challenge. I have arthritis in my neck too. Usually it's what pains me the most. Lately it's been my right index finger. I've learned to improvise by using the three fingers to the right of it. Pathetic? Sadly yes. I suppose this too shall pass.

[Barrister in reply to Tessie62]

Yes, you just learn to cope. But it got to the stage that my feet were so painful that I couldn’t walk. I’d been to my GP in the U.K. several times with it and just got “ I expect you’ve got a bit of arthritis” so went to see a doctor in the ME ( he was English!) and he sent me off for scans which showed synovitis so then saw a rheumatologis, more bloods and scans and I got a diagnosis.

[Deb-Tum]

Hi welcome!

My bloods have ALWAYS been normal apart from the odd blip when I flare.....I was diagnosed as I’m “text book RA” in every other way,...including responding v well to high dose steroids. My consultant said 20% of RA sufferers have normal bloods AND 20% of people without have the RA market.

I’m a scientist myself but really wish medics wouldn’t JUST look at numbers, talking, examining and X-rays/scans show the pain!

Good luck, hang in there, can you see a different doctor? Don’t give up x

[Tessie62]

Thank you whaleroad! Love the name btw. Yes I'm in the U.S. where healthcare sucks. Sorry for being fresh. Very frustrating. I've reached out to many professionals and spent lots of out of pocket money and time for....naught. The doctor that diagnosed me in 2011 with an autoimmune disorder put me on Hydroxychloroquine. I miss him. He retired. I've been asking for it again but with negative labs I can't get anything. I have Tramadol but it's a band-aid. Rarely do I take them. I'd like answers. Not drugs to mask the pain.

I'm strong, stubborn, and determined. I will persevere.

[Kai-- in reply to Tessie62]

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May be some clues here ( healthunlocked.com/nras/pos... , healthunlocked.com/cure-art... , healthunlocked.com/nras/pos... ), Tessie62? 🤔 Wishing you answers soon. 😌 🙏 🍀 🌺 🌞

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[Tessie62]

Thanks Deb-Tum! I agree and that's what I've been trying to convey. "Stop going by what my labs read and look at my hand"! I suggested a Mayo clinic. They were all over that. Can't imagine why. Could it be I wear them out?

[sharon6768 in reply to Tessie62]

Where are you in the U.S.? Maybe you should talk to a hand/shoulder surgeon. The doctor who did my thumb surgery was just as good as my rheumatologist. He was the one who insisted that I see a rheumatologist because of what he saw while operating.

[Tessie62 in reply to sharon6768]

Hi Sharon6768! I live in the Kansas City, Mo area. I saw an orthopedist in the mix of doctors. You'd think he'd know what I was up against. He didn't offer any help either. I guess I come off too calm....

[jetttsd]

My blood tests are always negative also. For years my general doctor would run blood test and tell me not RA and would not refer to a rheumatologist. Finally my knee flared so badly that I had to have fluid removed twice in a week. The orthopedic Dr. tested the fluid as it was not normal color. It came back inflammatory. He sent me to a rheumatologist who diagnose zero-negative RA.

[Lyneal]

Hi I had similar to you, my test were all negative, but I have been diagnosed with sero negative RA which now they are thinking well in my hospital that there is not a lot of difference between the two. I am on Methotrexate injections, and Naproxen. I h@ve a helpline phone no so I can get help whenever. Hope you go on ok, keep on demanding to see R A consultant. Good luck.