I was at the neuromuscular specialist for my son today. In the course of discussing his joints, we discussed mine (because we both have hypermobile joints). So, I mentioned that I have RA. He looked at my hands, smirked, and said "Oh really? Where?!" It just really put me in an odd place. What if, after 2 years of tentative diagnosis and 6 years of diagnosis and dmards, it isn't RA? What if all of this joint pain is something else and I've been taking the medications for nothing. How will I ever really know?
I am sero-negative. I don't have a lot of visible swelling as long as I'm on a DMARD. I have little to no joint deformity. I just have a lot of pain and stiffness.
I'm seriously upset right now. Do you all question your DX this much?
Sorry to pop in and complain (again), but I do read ;)
Hi 6xmum,
I can understand how you are feeling. I had a very hard time excepting my DX of RA. My joints hurt something awful but I didn't have any other signs of having RA, until I had to see a doctor about why both my hands, wrist and elbows swelled up and why they felt hot, numb and tingling at the same time. My blood was taking and my ESR and RA factor was off the charts. Well they decided right then that I had RA but I still did not have all the symptoms of RA. So how could I have RA? It wasn't until I saw some of the xrays and saw some of the damage my joints where showing that I could accept the DX. Now I am sure you are asking yourself "what does this have to do with me?" It does. You are classified Sero Negative, being Sero Negative means that your can still have RA and it isn't showing up in your blood work yet, but it will as time goes on. More than likely your RA was caught early enough that there is no joint changes.
There is no doctor that can say "Oh really, where?" and question you about your RA, without knowing what your blood work and xrays says about you. Just looking at your hands does not qualify him to say otherwise. My RD just said that I have mild swelling with my RA and that makes it very hard to know where you stand with your RA, unless new test are given to see just what is going on with your joints. I would not worry about this doctor and keep taking your dmards, as they seem to be helping you slow down any joint damage. By the way, there are many times I still question having RA, I think many of us do.
I hope you have continued success with the DMARDS and please, don't worry about what the doctor said to you.
I got the dx at the age of 15, after a year of the JRA/lupus/Lyme debate. A prominent specialist was sure I had FM; my 1st rheum. was sure it was JRA. That spclst. told me that just having an elevated RF doesn't mean you have RA. Serologically, I am not the classic RA pt.
While Nero fiddled, I burned -- taking only aspirin and walking flat-footed for a year. No family hx of RA and I was a robust, athletic child.
I am 31 now. I am still not certain I have RA, though my docs say I do. I don't think anyone cares to look at it with new eyes anymore. Except me. My current doc marvels at my well preserved joints and joint spaces -- having been only on pred. & plaq & NSAIDs & herbal remedies all these years. He says there's hardly any damage at all. But I burn, swell, squirm and wince constantly with all of the connective tissue pain and stiffness in many joints.
Only God knows for sure my dx. And, as I stand at the brink of biologics vs. MTX, He's not telling me -- or my innumerable docs -- yet.
Just venting, too.
Keep plugging :) I guess the only way you could see what would happen is to quit your DMARDs like I did several years ago for a few months. I was fine 'til a stressful time hit me hard. Bad flare. Tread with some care if you experiment the way I did. If something's working & you have no sign of side effects, your best bet might be to stick with it.
Wish you -- and all who come here -- well. :)
My docs smirk and diagose me with fibro. Their smirk means there is no other diagnosis that is feasible so throw it into the fibro freaks. I hate it. Some thing is very very wrong, I used to be quite muscular and active, now very weak. What is it then?????? Seems no one knows so they just throw it into the "what's her problem???????? gotta call it something???????? nothing we can do for her anyways
If you looked at me you'd never know I had RA. No swelling, everything looks perfectly normal. But I have it that's for sure!
Susan
It sounds like your treatment is working like we all wish ours was!
You are part of the new generation of RA patients. I part of the old where it is obvious that someting is really wrong.
Your neuro guy needs to read up! (Are you sure he was not marvelling at how great you are doing?)
I was diagnosed with RA about 3 years ago and not really had a flareup since the initial one (which some literature says could have been brought on by the severe viral infection I had the week before and the "RA" could be a one-time thing). Anyway, when you mentioned in your post that you have hypermobile joints, it struck a cord with me. I have been recently diagnosed with Hypermobility Syndrome. You may already know about this. I have been wondering if this has been my problem for symptoms that I have been telling doctors about for over 10 years and they didn't know what to do about. Ask for x-rays of your hands and feet, erosions don't lie. I was diagnosed fairly quickly but the dmards don't stop progression just delay it. The TNF blockers are supposed to stop progression tho. That doctor could make a fortune if he can diagnose another speciality in 2 minutes! SusanI kind of had the opposite experience when I went in to see an orthopedic spine doctor. He started looking at my hands and said "I would have known you had RA just by looking at your hands" This rather surprised me; because in my opinon my hands; although my knuckles are rather large at all the joints; they do not appear damaged from the naked eye. X-Rays do show erroisions; but I didn't think you could tell. I asked him how he could tell and he went on to point out things that were odd including the way my fingernails were shaped. I'd never in all my days heard of anything of the sort. I still feel like he was just showing off; like he was a know it all doctor. Which of course he was. He was smart.....but I hate it when doctors act smarter than you....or your other doctors.
On this same visit the specialist told me I had RA in my back after looking at x-rays; and when I said "I didn't think you could get RA in the back" He says "You most certainly can and you're a perfect example" He had to give me an expensive MRI to prove it. Guess I needed the proof more than anyone.
I didn't care for his attitude to be honest.....and I don't really like the sounds of this doctor you saw with your son 6X. I think we all want to be told eventually that we don't have RA and be given some quick fix for the problems we've suffered over the years....but I think it's unlikely to happen. I'd caution you about going off your DMARDS.
If what you are on is fairly mild and it's working well don't risk messing with it. I did that years ago and when I finally realized I honestly needed the medication it was too late. Weaker treatments were not as effective for me anymore. Certainly discuss it with your RD before you do.
Best of Luck.
Thanks for all the replies! I feel better about it today. I do trust my rheumatologist, and I don't think she would have subjected me to methotrexate, plaquinel, prednisone, arava, enbrel etc. if there wasn't something wrong (sorry about the confusion of just saying DMARDs in the last post... I forget that Enbrel is a TNF medication). I've gone off of everything before and know how bad it gets. But, sometimes, since I don't have visible damage and I still have flareups even on the medications, I start worrying that we are off base with the DX. I suppose I should just talk to my RD on the next visit instead of griping here ;) Anyway, thank you all for reading and replying.