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How long did it take you to get a diagnosis?

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Posted 11/10/2008 10:15 PM (GMT 0)
I'm curious as to how long did it take from the initial set of symptoms to being properly diagnosed - especially for RA?  I'm sorry if this has been discussed before.  I looked over the old posts and I couldn't find anything (unless I missed it??  If so, maybe point me in the right direction?). 

But the reason I ask is that I've had my fair share of joint pains over the years that came and went.  I never really thought much about it because I do have Uc.  I've been tested numerous times for RA and Lupus in which the tests always came out negative.  The only blood test that came out positive was ANCA - but I expected that because of my Uc.  I even went to see a rheumy (appt from hades btw!) and he didn't offer me any insight.  For the past couple weeks, the first 2 fingers on my right hand began to swell, are achey, stiff and get red in the joints.  I went to the doc and she said I have OA because I am starting to get bony knobs on my joints.  I also went to see her about a month ago because I have been having horrible fatigue and she could find no cause for it.  Then I was reading online that sometimes RA can cause rashes in which I have been battling one on my face for nearly a year - once again, no known cause.  She doesn't feel that it's RA because I don't have the swelling or pain in my left hand (a little stiff though), just the right.  However I do have all over body stiffness in the mornings and it is really hard to get out of bed without feeling like I got ran over by a train. And sometimes I get knee pain in both knees but no swelling - more like I have water under my knee cap feeling. I just started to get heel pain as well but it's not that bad. I may be wrong, but I feel as if I am starting to show signs of RA.  If I am then I may have to persue the matter more in depth so I can avoid or halt any damage to my joints.

So how long did it take you to get a diagnosis and did you end up having any joint damage in the meantime until the docs could make up their minds??

Posted 11/10/2008 11:43 PM (GMT 0)
Hey Sherry.. I don't have RA, I have PA.. but it took me a year and a half to get diagnosed.. it was CRAZY! They thought I had everything under the sun, EXCEPT for arthritis... I guess they thought I was too young to have it... Little did they know! :) I don't always get the swelling, I do get the pain though.. Can you take biologics? Have you been on anything for your possible OA?
Posted 11/11/2008 12:01 AM (GMT 0)
I've never tried the biologics yet. I'm still in the early stages of whatever it is that I have. I am on an immune suppressor though but I don't think that will help if it does turn out to be RA. I can't take any anti-flammatories for OA so I am doing the wax dips, the pain creams and Tylonel for now. It seems to sort of help - as long as I don't bend my fingers that is! :) I was sort of thrown for a loop too when the doc said OA in my joints because I thought it was my trigger finger. I never thought of arthritis either to tell the truth. But now that I think about it, I do have a classic case of arthritis - I just don't know which one! lol
Posted 11/11/2008 12:27 AM (GMT 0)
Can you take DMARDs? I don't think they are effective for OA, but they are for RA and PA... I am curious as to what they are going to do with you... I didn't think I had arthritis either, til one day I was looking online and I saw there was a type of arthritis that deals with psoriasis.. when I finally went to the rheumy, I was in there less than 5 minutes and he told me I had PA... a year and a half I went undiagnosed.. and within 5 minutes I had an answer! Did you get one of the paraffin machines? Do you still like the Australian dream?
Posted 11/11/2008 12:31 AM (GMT 0)
Hmm I don't even know what a DMARD is! :) And yes, I am still in love with the Australian dream. In fact, I told my hubby that he should use it for his knees, ankles and wrists that have OA as well as my son who had corrective surgery on his arm (it bothers him now and then). They looked at me like I was nuts though lol I got the paraffin thing at Bed, Bath and Beyond and I don't know who uses it more, me or my daughter. She loves having the wax on her hands - that's young teens for you!

I think for me, if in fact I do have RA then I would just promote my 6mp to a biologic such as Humira or Remicade. If it's strictly OA then I am going to have to grin and bear it and deal with it the best I can.
Posted 11/11/2008 1:14 AM (GMT 0)
Disease Modifying Anti-Rheumatic Drug... DMARD :).. Plaquenil and MTX fall in that category as well as the biologics.. Usually when people can't take the NSAIDs they take a DMARD.. :)

My daughter loves the wax thingy too! She loves to put her feet in it! :) She's ALL about pampering herself!
Posted 11/11/2008 3:08 AM (GMT 0)
Hi Red...you mentioned a rash? I often will get a rash for no reason on my back..these strange red raised bumps and always in the same location? I have never heard of RA causing a rash? That is really interesting! I can be standing in the kitchen fixing dinner or something and the next thing I know there it is..the weird rash.
Posted 11/11/2008 4:06 AM (GMT 0)
You have had sacroiliitis? Are they investigating you at all for spondyloarthropathy associated with inflammatory bowel disease? Sacroiliitis is a hallmark of the spondylitis diseases which can also affect the fingers. I have osteoarthritis in my finger with HUGE nodules on the knuckles. But I also have enthesitis in my fingers. When it flares my knuckles get red, swollen and very painful. My rheumy was reluctant to investigate my finger complaints, always attributing it to osteoarthritis since I have such prounced nodules on my knuckles. Then one time I arrived at an appointment with lots of swelling and inflammation and he then ultraounded my finger joints discovering severe enthesitis. I have had several steroid injections under ultrasound guidance into my DIP joints in the most severely affected fingers. They really help.
Posted 11/11/2008 4:09 AM (GMT 0)
PS It is very easy to see on xray of the hand and fingers if RA is the culprit as opposed to osteoarthritis. RA causes bone erosion and OA does not. More often OA causes extra bone and or cartilage growth - ie the nodules [bone spurs]. I have one bone spur in a joint that looks exactly like a mushroom. It is so big that soon my joint will no longer bend. Also, google inflammatory osteoarthritis.
Posted 11/11/2008 1:05 PM (GMT 0)
Momto3 - I've never heard of RA causing rashes either and when I was doing an internet search yesterday I ran into a website that had some patients telling others on how their first symptoms started and many of them had unexplained rashes. So I don't know if it's a coincidence or not.

Ides - the docs said I had sacroiilitis but it didn't show up when I had xrays and a MRI. I recieved 2 steroid injections and they only helped marginally. My doc would press on the SI joint and I would about jump thru the roof because it hurt so bad. I've had the AS investigated as well as other spondyloarthropathies and everything came back as negative. So I am still in that category of "What the heck is going on???" I KNOW that something is wrong, but there was no evidence until now (meaning my hands). I do believe I have something and whatever it is, the progression is slow. So I am just waiting until the evidence is clear to have a firm diagnosis of something - anything.
Posted 11/11/2008 3:02 PM (GMT 0)

It took me about 6 months to be diagnosed.  My RA came on rather sudden and I knew something was terribly wrong.

I'm on Imuran, which is very similar to 6mp, and Humira for my RA.  I would get a second opinion.

Posted 11/11/2008 10:14 PM (GMT 0)
Lori here,
For the past year I've been sick. I've been diagnosed with RA from one doc, been told "I don't know WHAT you have and seek another opinion" by another doc, and my third rheumy says I have a False Positive
RA Factor and he doesn't know what I have. I have UC and took a nuclear whole body scan recently which showed degeneration in all my joints. (it had to be all??). Radiologist report states it's from aging. No swelling but sometimes see red on my knuckles and toes. Also redness comes out from under my skin. Skin gets hot and people can now feel it but I can feel cold or warm inside. Never had a fever. Having terrible pins/needles everywhere on my body and what seems like electrical currents going up and down my spine. There's more. Been told that I have fibromyalgia but then again I heard RA can also cause muscle problems. I know I have DDD and degenerative changes in some vertibrae. (hope I spelt that right). Can't take NSAIDS cause of bad acid reflux/gerd and inflammed/ulcered stomach tissues. Can't take any med that surpresses the immune system since I'm +PPD (latent TB-not active). In 1996 someone with TB came toooo close to me I guess. Can't take the INH antibiotic to get rid of it since the docs say it's too dangerous for me. I'm 57 and my liver enzymes already do tricks on me. INH is very toxic. I also have asthma and have taken prednisone pack for short periods but it never activated the TB. I didn't know I wasn't supposed to take it.

It seems that it's RA since if one side hurts, then the other side hurts as well. And all the other symtoms..both wrists, ankles, elbows and shoulders, neck, etc. I heard you don't have to have anything positive come up in a blood test that proves any disease and you don't have to have swelling to have RA. Don't know if I should just diangose myself. But what's the purpose in that? I can't take meds for my condition.

So, to this day...just about a year of suffering and getting worse, I'm still not really diagnosed. As I said, one doc said he doesn't know, one doc said a deffinate NO to RA and one doc said YES to RA. Personally, I think I have RA (God forbid), but I've been thinking about other types of mixed connective tissue disease that can bring on arthritis.

The answer to your question....1 year and still waiting.
Posted 11/11/2008 10:44 PM (GMT 0)

Red, I posted this in another thread but I thought I would post it in your thread as well.  There is a new blood test that helps confirm the diagnosis of RA, its called the anti-ccp.  You should see if your doc will run that test.

What is anti-CCP?

Anti-CCP, which stands for anti-cyclic citrullinated peptide antibody, is a new and exciting blood test to help doctors confirm a diagnosis of rheumatoid arthritis.

Guide To Rheumatoid Arthritis

When is it appropriate to have this test? Does anti-CCP determine if a patient has rheumatoid arthritis?

Anti-CCP is a very useful test to order during the diagnostic evaluation of a person who may have rheumatoid arthritis. If present in such a patient at a moderate to high level, it not only confirms the diagnosis but also may indicate that the patient is at increased risk for damage to the joints. (Low levels of this antibody are less significant.) In the past, doctors relied on another antibody, the rheumatoid factor (RF) to help confirm a diagnosis.

Citrulline antibody is present in the blood of most patients with rheumatoid arthritis. It is used in the diagnosis of rheumatoid arthritis when evaluating patients with unexplained joint inflammation. A test for citrulline antibodies is most helpful in looking for the cause of previously undiagnosed inflammatory arthritis when the substance detected by the traditional blood test for rheumatoid arthritis, rheumatoid factor, is not present. Citrulline antibodies have been felt to represent the earlier stages of rheumatoid arthritis in this setting.

Posted 11/12/2008 1:19 PM (GMT 0)
Thanks for the replies. It seems that some of you got diagnosed fairly quickly - meaning within a 2 year span. So I have hope that I may find an answer to my problems soon. Today I feel like total crap. My fingers were hurting in the middle of night and every time I flexed them, I woke up. It's cloudy and rainy here and my whole body feels like one giant cramp and then I have a headache that just won't go away!
Posted 11/12/2008 11:24 PM (GMT 0)
When I had my physical year and half ago..I told my gp that I had wrist and hand pain...even though my sedrate was elevated at 59 ,she told me it was carpel tunnel.repeat the sedrate in 3 months, I never did.wear a brace...wtich made me very stiff..So, i waited a year and decided i had enough...I had no carpel tunnel..my sedrate increase again to 74 and my rf was 104..than she sent me to a rhuemy at the cleveland clinic,this was like in may..by july he told me I had RA...than I went to my second rhuemy because of insurance he told me I had RA...But during that year Other things started to happen..my feet,knees started to hurt also...THe fatiqueness and just feeling sick...I dont get alot of visable swelling but he told me I had enough in my blood....My stiffness used to be bad in the morning before I new anything was wrong..I get stiff throughout the day at moments or more so when I flare..Im just learning..Oh my xrays are negative, even after suffering for almost two years..but everybody is different and not always have to be text book..good luck...nutt
Posted 11/13/2008 1:19 PM (GMT 0)
Unfortunately we can't go off my sedrate because of my UC. I am bound to get some sort of high reading with that at some time or another. But when I go in to see the doc again, if I get worse, then I think I will ask her more in depth about the possibility of other arthritis's. But what if I want text book???!! :) I know sometimes things aren't just as cut and dry as one would hope so we keep on plugging along.
Posted 11/13/2008 7:22 PM (GMT 0)

Sherry,

I can imagine how frustrating this is for you to get a proper diagnosis.

One thought came to my mind after reading some of your other posts. Do you have psoriasis? I don't see it in your signature, but I did see you mention it in a reply to winni on the UC board.

Has your rheumatologist considered Psoriatic Arthritis, which is also in the family of spondyloarthropathies, even though you've tested negative for the HLA-B27 antigen. You mentioned your rheumy doesn't think you have RA because only your right hand has swelling, not your left.  The asymmetry is common in PsA (psoriatic arthritis.)

http://arthritis.webmd.com/psoriatic-arthritis/psoriatic-arthritis

"Asymmetric arthritis makes up about 70% of all cases of psoriatic arthritis. It often involves one or a few joints, like the knee, hip, or fingers. Although it's frequently mild, it can sometimes be debilitating. The inflamed joints may be red and hands and feet may be swollen."

These are also a couple of good links:

http://www.emedicinehealth.com/psoriatic_arthritis/article_em.htm

http://www.spondylitis.org/about/psoriatic.aspx

I was originally diagnosed with "sero-negative inflammatory arthritis" in 1991, since I was negative for the rheumatoid factor. Between 1997 and 2004, I had iritis six times, so I convinced my rheumy in 2004 to test me for the HLA-B27 antigen. I'm positive for that, so my rheumy now calls it spondyloarthropathy, and I'm on Enbrel, which works fairly well for me (not as well as my first year with it.) Enbrel is also prescribed for PsA, so that might be one of your options. I was also diagnosed with IBD in 2003, but that diagnosis is currently debatable. Oh, like you, I also have Raynaud's, fingers and toes, and man, I hate winter!

Anyway, good luck. I hope you get the right diagnosis and some better medication.

Jan

Posted 11/13/2008 8:07 PM (GMT 0)
Yes, I have psoarasis along my hairline but no where else. If I let it go too long though it does creep down the side of my face by my ears. I haven't had an issue with it since starting 6mp though. But I will definately look into the PsA. I hear you on the winter thing! Ugh! I hate it! I always feel like such a freak when I wear gloves outside in 60 degree temps. Luckily though, my toes aren't as affected as much as my fingers. All it takes is good cold wind to make my fingers go numb but it takes much more then that to affect my toes that way.
Posted 11/13/2008 8:43 PM (GMT 0)

Hi

I have psoriatic arthritis (at least that's what they diagnosed me with).   I only had one outbreak of pulstular psoriasis years ago on the bottoms of my feet.   Then a few years latter the joint pain started.  Unfortunately after trying a few of the pill drugs they had I stopped going to the rheumy as I didn't want to start on injections.   Finally the pain got so bad and the damage in my hands so severe that I couldn't stand it any longer.  Have been on Humira since August and it has helped me a lot.  Still have some pain but nothing like before and hopefully it will slow the damage so that I can continue to use my hands.  I have the arthritis in my hands, feet and knees.

Sounds like you might have the psoriatic arthritis.  They use a lot of the same drugs for that as they do for RA.

Good luck,

Alicat

Posted 11/17/2008 7:58 PM (GMT 0)
Took me about 10 years to get diagnosed.  Pain in shoulders and knees, with the left knee swelling about three times during that time and the bottoms of my feet swelled twice to the point I couldn't walk (yes, the bottom, middle part of my feet - it was like tennis balls were tied to the bottom of my feet).  Pretty serious symptoms in hindsight, but once the pain finally escalated to intolerable leves it took about 9 months to get diagnosed.

Posted 11/20/2008 1:18 PM (GMT 0)
Thanks for the replies. I am thinking that whatever I have is progressing slowly - possibly due to me already being on an immune suppressor perhaps?

Leeloo, 10 years?? Really? Did you go thru the whole maybe it's all in my head sort of deal? That is how some docs made me feel last year. But I know the pain is real and the swelling is real. And now the docs are finally taking me serious.
Posted 11/22/2008 9:20 AM (GMT 0)
Still waiting............
my ESR/CRP are always high and I have a beta band on my SPE. Everything else is always negative.....
spinal stenosis can cause joint pains though.
Posted 11/23/2008 4:10 AM (GMT 0)
Hi everyone,

I'm new here, but I wanted to say that it took me about 12 years to get diagnosed with RA. I had chronic low-grade fevers (99.4-100.4) and fatigue but the doctors could never figure out what was wrong. I finally developed joint symptoms this spring (pain in my neck, hands, elbows, knees, and feet) and blood tests came back positive for RA (elevated rheumatoid factor and + CCP antibodies). My CRP and ESR levels are always normal, even when I am having a flare-up (which is atypical for RA, but I'm not following the textbook anyway).

It is totally frustrating to have symptoms for so long without a diagnosis. After a while, you begin to wonder if everything is all in your head- I certainly did. Having RA stinks, but at least now I know what is wrong with me. Enbrel and methotrexate have done wonders for my joint pain. I found that prednisone works wonders for my temperature- NSAIDs didn't touch it.

Sally

Dx: RA (finally dx in March)
Rx: Enbrel 50 mg weekly, methotrexate 15 mg weekly, folic acid
Posted 11/26/2008 4:51 PM (GMT 0)

Sounds like me and Sally are pretty similar.  And yes, I had syptoms for 10 years.  Doctors constantly said "hmmmm, you're too young for arthritis....".  I just found out last year there is something call juvenille arthritis!!!  When I was in my early 20's my knees and shoulders would hurt soooo bad for no reason.  I actually have video of me at the beach with some friends from when I was about 22 years old, and I am laying on the floor playing video games and you can see me gingerly moving my arms and wincing in mysterious pain.  I had x-rays taken every few years when the left knee would swell with the same result - no physiological problems or deformations.  I would get sent home with some anti-inflamatories and nothing for the pain.

Enbrel and MTX is the magic combo for me too!  Took me and the doctor about a 16 months to figure out this combo.  Other stuff worked ok but this combo has pretty much removed all symptoms.  After the pain I went through - and you guys here know what I mean - I just can't believe how fortunate I am to be in this position at this time!

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