Update saw doc today 4-19

my doc as u all know ran some tests unfortunately they all came back normal, then the doc said something that we all had talked about on here and that was it looks like i have R.A. but the test for it was negative so he said even he wants a 2nd opinion and is setting me up with a rheumatologist cuz my doc said he can see swelling, redness of my joints, and can feel abnormalities in my joints but since my test rresults r normal he wants a specialist to double check his findings before he says its R.A. so for nw he has it classified as definate arthritis of unknown origin with osteo arthritis and nerve damage. when i was a kid i had a curved spine as of now my spine is no longer curved and my hips r back in alignment i have alot of thoughts cuz doc ran lupus, r.a., and some inflamation test all r normal with no explaination of my chronic pain, he has me down tentatively for fibro and r.a. my doc is reluctant to say for sure until the specialist give him his 2nd opinion on the subject but i was also told the a rheumatoid doc is the only only who can make a definate dx of fibro i didnt know that but my doc said given the red swollen joints with extreme stiffness in the mornings and before bed and extreme pain during cold and or stormy weather and the nerve damage from my 2 major back injuries he is looking at fibromyalgia and r.a. i will post all the symptoms i am having i could really use advice on this cuz the doc today said i may be in the 20 percent of people who do have r.a. that test results show negative my questions r if that is the case is it possible that the lupus test he ran could be the same way being it too is an auto immune disease? keep in mind there is visible sweeling, redness, stiffness, hheadaches, vision changes, and they know the arthritis is in every joint of my body including my back any thoughts on this would be appreciated thank u :)

Hi, It sounds like you have a good doctor, I’m always impressed when they say they want an expert opinion.
I have heard of the RA test comming back neg, actually I think it can come back neg, more than 20% of the time. Often it comes back neg, then positive then neg again… It’s great that your dr. Is looking at the clinical picture more than the blood work… Many don’t !
About the lupus… That also takes a while to dx, as other things have to be ruled out first & you need a dr that looks at symptoms & can put 2&2 together. Perhaps the specialist can help r/o or dx the lupus. Although your symptoms do seem to point to some form of arthritis, hopefully you can get some more definitive answers. The fibro can be dx by your primary, but it sounds like he just wants to see what the Rheumy has to say…
Let us know how your apt goes,
Sending big hugs & special blessings

ty dee and my family doc is 95 percent sure its fibro related to the arthritis and nerve damage he siad he is 90 percent sure its r.a. but wants to be 100 percent sure cuz im medication resistant and he doesnt want to give me meds if it isnt the right dx my doc gradduated from john hopkins top 5 of his class lol im gonna cry if he retires on me cuz he is the first doc to do this much digging into my pain, most of my joints swell, get warm, they r very stiff in the mornings and at night, i have alot of tingling and numbness with it, my shoulders, elbows, hips, knees, ankles, all finger and toe joints, and back all have arthritis in them . my auntand uncle r both family docs and even they didnt do as much digging into my pain as my new doc is doing

Hi River!

So glad your Doc has the good sense to have a Rheumatologist take a look at you. Renie just posted a good blog about going to a new Dr. She worked for a Rheumatologist for 11 years, so there is something there you can use to your advantage.

From all that I have read on the blood tests to show about 80% of the people who actually have it will show on bloods, so that is why your Dr wants a pro to take a look at you. Plus in my case after months of looking for Sjogren's Syndrome to show up on my bloods, and my GP was certain I had it, the first 3 tests came normal, the next came up false positive, and the next two came up so high the numbers were literally 'off the charts'. He thought I had RA, as it turns out the second Rheum diagnosed me as having Psoriatic Arthritis, never had psoriasis in my life, but have pitted fingernails, and all my grandkids have psoriasis. So just goes to show you how tricky this all is.

Get your list of symptoms, past accidents, surgeries, meds, type of pain, what makes it worse, or better. Renie has the whole run down. We'll be glad to help you out. I had posted a good article on the difference between RA and PsA (Psoriatic Arthritis). I'll see if I can find it.

Wow, My RA Dr. diagnosed my fibro, on the second visit. Of course she had lots of blood work and other tests that had been completed by a prior Dr.. My first Ra Dr was a goofball, who just didn't care. I feel for you, I know how difficult and frustrating, it can be... Lupos has many tale tell signs that may or may not show up on tests, same with RA. My Doc says she doesn't like to say RA unless she see's physical damage when a test comes back negative for RA, Do you have any of the curvatures, or twisting of hands and fingers, toes? I would get a second opinion for your own well being! Good Luck! take care,



Here are a few interesting brief articles, I am so glad you are being sent to a Rheumatologist, I am wishing you the very best!

hi sk no worries my doc is forwarding what he has and i have every bit of medical in a briefcase just a grab and go kind of thing lol :) an di will check the articles out ty :)and i hadnt been on as much cuz my hands hurt alot and i havent been doing a whole lot of typing its driving me crazy cuz i have so many ideas for new poems

hi jackie and yup my nails have ridges and curve , and my knuckles r not normal but they arent exactly deforrmed as of yet but the e.r. doc that saw me said my ankles and toes have slight deformaties he was the one who found the raynaud's and my family doc confirmed it, it was also my family doc who said he himself wanted a 2nd opinion and asked me if that was ok with me that he get me a specialist , my family doc is the first one ever to do this much digging into my pain im very happy with him

ty sk , and i willcheck them out im also gonna print out a complete list of symptoms just like i did for my family doc and highlight the symptoms i have on the various thing family doc thinks is going on to try and cut down on a dx time frame

Hi river,

I'm so glad that you have faith in you new doc, that is something that really helps in enduring this awful battle. I also think it is very wise to take your list along with you to the Dr. It really helps if you experience fibro fogs! I wish you the best of luck, and will pray that you get a quick diagnosis.

thanks jackie and yup my memory stinks bad i also am taking photos with me to the new doc of the swelling and redness in my hands ankles and feet so they can see what i deal with just in case they happen to not be acting up th day i see the rheumalologist