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Symptoms don't match RA diagnosis

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Old 03-30-2007, 01:22 PM   #1
Join Date: Mar 2007
Location: USA
Posts: 8
jeff'sdawn HB User
Question Symptoms don't match RA diagnosis

Dh was diagnosed with RA, but I'm still not sure if that's what he actually has.

Dh started having "wandering" joint pains about 5 years ago. He went to his doc and a rheumie and everything came back negative. No help was found and no diagnosis given. He went into a total remission for the past few years w/o any meds or changes to diagnosis other than going on a vitamin supplement.

Several months ago he started having small flare ups again. Mostly in a finger or his wrist. Before his remission, flare ups would last only a few days. Since having symptoms again, he has had more intense pain and lasting MUCH longer. This is what made him try the whole doctor route again.

No bone damage found on Xrays, although there is scaring in his wrist where he's had a lot of pain and weakness for weeks now. He had a terrible flare in his neck area for 2 weeks. He had to take vicodin it was so bad - and it still didn't help much.

Anyhow, his GP took all the regular tests - sed rate, RA yada yada. All came back normal. So he was sent to a rheumie. Apparently there is a very new test for RA that can be read as definitive if it comes back positive (regardless of the symptoms not matching it seems). His came back positive (after only a month taking the older one which was negative). From then on, every question he had for the doctor about possibilites of fibromyalgia or psoriatic arthritis (his symptoms match closer to those than RA and we read that you can test positive for RA and have other autoimmune diseases - whoopee ). She just kept coming back with "well, you have RA".

The hallmark symptoms of RA - the ones that if you DON'T have it makes the diagnosis of RA very unlikely....he doesn't have! He doesn't have morning stiffness at all. He doesn't have joints affected on both sides of his body at the same time. From all we've read about this (on ***** and books etc), these are true in all RA cases. He doesn't have them.

I'm doubting his diagnosis but his RA says the test says so and so he has RA.

Do we go to another RA for a second opinion (I'm thinking yes ), and has anyone else heard that the markers for diagnosis no longer matter if the test for RA comes back positive?

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Old 03-31-2007, 07:39 AM   #2
Senior Member
Join Date: Oct 2002
Location: Bloomington, IN USA
Posts: 296
creinha HB User
Re: Symptoms don't match RA diagnosis

I'm assuming the test that came back positive was an Anti-CCP? This test is highly specific for RA. You can have RA with normal RF and inflammatory markers such as ESR (Sed Rate) and CRP (C-Reative Protein). This is called seronegative RA.

When I first started having problems, I presented as "migratory arthritis" as well. My pain would move from one joint to another every couple of days. Eventually, it settled in my writsts, knuckles, and shoulders. You also might want to do some research on Palindromic Rheumatism. It presents with migratory pain, no joint damage, and can have a positive Anti-CCP as well, which is why it is thought to be an abortive form of RA.

Also, I'm not sure where the "scarring" was in the wrist, but RA can also damage tendons.

What medications did the RD prescribe? If your DH was given prednisone and it helped the symptoms, then the condition is inflammatory. This would rule out the fibromyalgia diagnosis.

Old 04-08-2007, 02:20 PM   #3
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Join Date: Aug 2004
Posts: 10
gosgirl HB User
Re: Symptoms don't match RA diagnosis

Has Dh ever been tested for hepatitis? I was misdiagnosed with RA 14 years ago. My doctors aggressivley treated with Gold, Methtrexate, Humera, Embrel and Remicade . Nothing helped, as a matter of fact, I felt worse. One day when I was really in the pits, (throwing-up, severe severe leg pain, fatigue so bad, I could hardly get out of bed) I went to see the new doctor in town. We talked for a while, he listened, then ordered a blood draw to test me for Hepatitis. Bingo, Hepatitis C, geno 1a! Turns out I contracted the virus in 1975, after a blood transfusion. One never knows. Also, a high Rheumatoid Factor can indicate many other types of illness. Hope this info helps.
Good Luck ...... Gosgirl

Old 04-11-2007, 04:19 PM   #4
Join Date: Jan 2007
Location: NC, USA
Posts: 6
lastin HB User
Re: Symptoms don't match RA diagnosis

Did you ever have an MRI? I'm wondering because I'm guessing an MRI is definitive. I had one that said I have arthritis in my back. However, it is interesting you mention this b/c I had one dr think I had hep. I have increased liver enzymes when tested 3/4 times.

Old 05-21-2007, 06:23 AM   #5
Join Date: Feb 2006
Posts: 2
tteswod HB User
Re: Symptoms don't match RA diagnosis

Hi All I am sorry i have no answers for your illness, but i would like to share my story with you, it may give you some hope.

I am a 52 year old male worker in Australia.

My story starts a fews years a go, i started getting pains in my joints, sometimes in one joint and sometimes in two joints.

The pain got worse and at times i could barely walk or use my hands, even holding a cup of tea was unbearable, My wife had to help me in and out of bed on some occasions, and then like magic the pain would dissapear completely.

The pain moved around my body in my hands, knuckles,shoulders, elbows, hips, knees, feet and big toes, sometimes there was a little swelling, but no redness.

As the pain attacked me i could no longer hide my pain and disability, and i had no choice but to resign from my job.

In the meantime i posted on medical boards hoping to find someone who had the same symptoms, the hard part was which section of the board do i post on. i got a few replies and i was told it could be arthritus, rhumatism, stress and other things, i was gratefull for the advice and investigated them all further.

I was also feeling very ill most times, i can only describe it as the sickness we feel when we are cut or injured (like in shock)
Another symptom, i had was sharp pains in my forearms like someone is sticking a pin in, this turns into a sore and doesn't heel. i always had about 10sores on my arms.

My Doctor sent me to many specialist including Arthritus/Rhumatolagist, Heart Specialist,Nerve Specialist, and Skin Specialist. i had many blood test done and had xrays, ultrasounds and other tests done.

All tests came back negitive, no one could shed light on my problem and i got fed up being passed around the medical system and taking the pain killers and ani-immflamaties.

So i gave up seeing the specialists and just kept seeing my family Doctor who advised me to stay with a specialist because he could not solve my illness.

One day i saw my local Doctor and he took blood and sent it away and it came back with high protein, so he gave me a glucose blood test which was sent away, on the next visit to my Doctor he said the results from blood test indicate that i have type 11 diabeties.

At this point i asked if my joint pain could be related to the diabetes, the answer was NO. He also said i had been tested for diabeties prior and was negetive.

Since my diabeties diagnoses a few months ago, i have stopped eating man made sugar, fats, margerine, butter, white bread and white rice, my weight has gone from 105.5 to 84kg and i no longer feel sick, my arm sores have gone and i have not had any pain what so it coincidence, who knows, i just hope it never comes back.

I am now back working and feel fantastic.

Regards Johnny Dowsett

Old 06-04-2007, 07:51 PM   #6
Join Date: Jun 2007
Location: Atlanta, GA
Posts: 2
Lynn75 HB User
Re: Symptoms don't match RA diagnosis

My daughter had the same problem. Dr said she had an elevated rheumatoid factor, but it was not conclusive. She was only 11 when they put her on steroids. I took her to this natural dr and found out she had an allergy to dairy products, specifically casein. You could at least try omitting anything containing casein from the diet. You'll find it in cake and muffin mixes, cereal bars, and of course in dairy products. If dairy does trigger the problem, you would see a difference in as little as 2 weeks, and certainly after 4 to 6 weeks. Some kind of natural detox would also help to flush out any impurities, and the allergens from the system. My daughter is a beautiful, healthy 17 year old now, with NO RA symptoms whatsoever.

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