this ties into the iGg thread started by neshema earlier. what are some other tests one should request if she suspects an autoimmune disease? i have had a negative ANA (am having a repeat), but have heard that many autoimmune patients can test negatively. what would be the next one to request? i read that the iGg can test for autoimmune?
my fingers are starting to curl in really badly. i don't have much pain, just inflammation and the curling. this is not normal. i don't think it is separate from everything else going on, despite my doctor thinking i have suddenly developed arthritis, aside from the pots. i am only 24, have no history of arthritis, and no family history. this began when i became sick, and i am almost entirely certain it is all part of what is going on. suggestions?

Get ue sed rate tested multiple times. Also the something compliment, forget...just say compliment and the doc will know, x-ray, bone density, and bone scans are all useful. Don't expect much. I lived with years of frustration with them changing my dx. Now, I love my rheumy and it doesn't matter cuz she made me comfortable with the uncertainty most experience. Did u have an RA factor test? Also, check for even slight amemia. You may have what they call "sero-negative arthritis" for now,But even many fibromyalgia patients end up with arthiritis. don't let them jerk u around. Be proactive. There are many drugs now to stop the pain and destruction...much more advanced than POTS. Also, cortison injections are great. What are your symptoms? Do you also have dry eyes and mouth? Do u have cold hands and feet? Do u have any noticeable swelling and redness? Any eye pain? There is a lot of hope for u. Get the right doc. Make sure u sleep (as I write this at 5 AM!). keep muscles aroung the joints as strong as u can...I can;t due to HR, but used to. Get x-rays of all problematic joints. Sometime need MRI. You arthitic joints might not show much, but look osteoporotic, If I think of more I will tell u. Quick intervention wiht methotrexate and/or and enbrel like drug, is amazing. Don't push urself with arthritis AND POTS. Both cause severe fatigue. U might want to ask for a drug called provigil. It helps the fatigue. I am beyond fatigue, but since I have had POTS, my sense of time is really messed up and I can never get anywhere on time. Keep me posted. Best wishes!

Gracie, take a look at this article about dx RA with MRI and X-ray. The Proposed new classification tree for the diagnosis of RA is especially interesting, I thought.

Rheumatoid Arthritis: A Practical Guide to State-of-the-Art Imaging, Image Interpretation, and Clinical Implications1

Neshima it sounds like you are a welcome wealth of information here. I am thinking that the DMARDS (disease modifying anti-rhumatic drugs) may be something I will explore next in order to get me able to walk and exercise again without all my joints acting up. Tell me, do you notice any interactions with these meds like methotrexate and your dys? You mentioned you hr going up with exercise (fortunately thats not my problem, er, right this minute anyway) but I'm more concerned with drug interactions with the dys at this point.

I am seronegative for all the usual suspects; ANA, RA, SED, and Sjogren's antibodies. My Ganglionic AChR was negative. All I have to show (test wise) for the joint problems now is slightly elevated CRP and for some weird reason high creatine in my urine. I also have MRI evidence of bursitis and synovitis in several joints and tissue swelling in my hands per x-ray. I am clinging to these findings like the holy grail because I know how much stock Drs put into tests and I have come to loath that oft-used phrase: 'Nonspecific findings".

So please let us know how you have tolerated the therapies for these rheumatic problems and I am completely jealous of you and your Rheumy, good for you!!

I haven't but my catecholoamine levels were normal so I don't think it pertains in my case anyway.

wow, you guys, GREAT information.
may i ask you two - did your arthritis begin before or after you developed dysautonomia symptoms? you both have been diagnosed with RA?
your information was wonderful. neshema, i will request those tests you suggested that i have not had. i am awaiting back the sed rate and RA factor.
mccaimless - the publication is great. however, i found that i didn't seem to fit in with the RA classification. i have not had any diagnostic testing, nor have i seen a rheumatologist yet (that's next), but i don't have symmetrical swelling.

a little history on my joint issues - perhaps one of you can tell me if this is usual/unusual.

first of all, i am 24, active, no history of arthritis at all in family, so i don't think i seem much of a candidate. as you probably know, i lived in rural africa for a little less than a year. prior to leaving, NO medical history or concerns at all.
in africa, i had had a virus that lasted for a few days, with a fairly high fever (103ish), but it passed and all symptoms went away. i continued living there for two or three more months with no symptoms/signs, and never thought about that virus again. i returned to the states, and about three weeks later, started developing odd symptoms.
i gained more and more symptoms for a few months, then the joint issues started. the fingers on my right hand became really inflammed at the middle joint and they were curling in. pain and stiffness, mainly in the morning, subsided in the afternoons. but the swelling and curling was constant. then i developed this lump on my right ring finger that was red, swollen, and intensely painful. anything that brushed it made me scream.
this went on for a couple months, then the swelling and stiffness went away, then re-emerged on my left hand. the same little lump appeared on the middle finger of my left hand. very painful. my left hand was swollen and stiff for a couple months, then went away.

this was several months ago, and i had no joint issues since. then, about a month or so ago, it started up again. first noticed the pain in my hips, which is getting worse. now my right hand is inflammed at the middle joints again, and curling inward. my left hand is not affected. i don't have that little lump i described.

sorry to give such detail and history, but my doc seems to think this is all caused by a virus. the pots and arthritis. i think that if it was caused by that virus i discussed above, wouldn't i have started having symptoms following it? not three months later? why would my lymph nodes and joints swell up like five months after that fever, but not while i had it? if this is from a virus, i have to wonder if i still have it?

anyways, just wanted a thought on the arthritic symptoms. i definitely don't think it is a separate issue from the autonomic dysfunction.

The more you describe these things Gracie the more Infectious Disease seem to scream out at me. I will show my husband this and see what he thinks. It could be a virus but it's a pretty weird one.

As far as RA goes,you are not too young to get it and at the very least you need to have the RF and SED rates done ASAP. Also with your fingers I'd push for MRIs of the hands so they can really see what is going on. I don't think the lumps you are describing sound like rheumatoid nodules, which tend to be painless and don't just come and go.

I don't have any dx yet for my joint problems. My rheum appt isn't until next week. I don't exactly fit into the RA criteria either, i.e. early morning stiffness that lessens with activity; my joints hurt most after I use them and don't usually feel too bad in the am (except my fingers are more swollen in the morning and I do get very stiff in my hips if I sit for long periods), Swelling, heat and redness in joints; again just my fingers are mildly swollen but my inguinal areas of my pelvis get hot when I'm really flared up (i.e. after doing a lot of walking or climbing) and there is obviously fluid under both my kneecaps. And of course I dont' test out right with the bloodwork.

I tend to think that Sjogren's makes more sense in my case because of the neurological aspects of my onset (yes the dys came on first for me) and I do have very dry eyes. But even though the antibody tests are considered only 75% sensitive, a dx may be difficult to come by based on my negative findings. I'll just have to see what this new Doc I'm seeing thinks.

thanks so much for the input, mccaimless. i am very excited to get my rf and sed back. i tested negative once for the sed rate, but i was also on antibiotics to treat cat-scratch fever (which obviously wasn't the problem). my hips were really really painful today, the worst they've been. i read somewhere that arthritis of the hips usually causes pain in the groin. my pain is more in the front or outside. i wonder if it could be bursitis? something is definitely going on because they are getting worse after weeks. i definitely need a rheumatologist ASAP!!!
i would appreciate you so much talking to your husband. i forget what field he is in, but i remember you mentioning it. at this point, i definitely don't feel satisfied with a pots diagnosis as the primary issue.

Gracie, I did PM you today about a possibility for you. I just want to say don't be too disappointed if your bloodwork comes back normal, it happens and it does not rule anything in or out. The sensitivities of these tests are far from perfect, RF is about 80% and SED rate is much lower for RA.
My hip bursitis manifests as pain in the groin and over the hip itself. The groin pain is more noticable when I'm moving but the pain over the trochanters is noticable by palpation. My MRI shows trochanter bursitis.
It will be interesting to see what your Rheumy has to say about it all.

I have the bursitis too. I get injections. They help, cuz it also usually gets so bad that my hip gets fluid in it from the arthritis, and they have to inject in the groin too, and that is a BIG, BIG deal and the radiologist does it. It is a drag, but helped me avoid surgery. As for how well I cope with arthritis, remember I got it when I was 9 yrs old. I basically know nothing else. And, getting POTS two years ago has been far worse for me. I think it is all related, the RA, sjogrens, and raynauds. I have neuropathy, dry eyes & mouth, but the mestonin actually has helped the sjogrens somewhat. I read they think these are overlapping syndromes. Anyway, I was on salagen, but it interacted with the tachy meds, and I though I was having a heart attack. So, I am off. I also went of mtx, even though it really works well in combination with enbrel. However, it is a drug I can barely tolerate, and I used to get very sick two days out of the week, even with the injections. I couldnt take it when I got pots. So, I am holding on enbrel and some injections. I need a joint surgery, but am not going to have it EVER. I grew up sleeping on the couch, and now, that fatigue seems like nothing compared to POTS. I hate POTS. I hate to say "hate." POTS has ruined most aspects of my life, and few docs know what to do. Enbrel is a blessing. I have ZERO side effects unless it is bad for POTS? JUst take a once a week injection. Stay away from steroids, cuz they are both good and evil. So, use them sparingly. For me, realize I know a lot cuz it has been most of my life. I have had more rheumatologists than u can imagine. I have a great one now. She and I skip the kid's stuff, like NSAIDS (which ruined my stomach), plaquenil, cellcept, imuran, azulfidine (well, I have tried everything pretty much) and now we just go for the enbrel which is the real thing. I wouldn't waste my time trying all these other things. Most people I know through the Arthritis Foundation end up on the end of the line treatments, and my doc doesn't waste time. Find an aggressive doc by asking around, and asking patients too. Get involved in the arthritis foundation and go to some events or classes. Then u will find out the scoop and make friends. Also, having dysautonomia AND RA stuff is too much for one person. The minute my RA associated symptoms get a bit out of hand, my doc fits me in immediately. I just can't deal with it all and there is no reason to suffer from arthritis anymore. Don't forget the vicodin. I start with a half. I rarely use it, but keep it next to my bed, in case I wake up unable to move. An electric blanket is great. I love ben gay, especially after a shower, except now I am too out of breath from the shower to deal with it. Don't suffer! Please don't suffer. When I was a kid, there was aspirin and steroids. I suffered a lot. Now, it's no big deal. However, if I didn't have my rheumy and my enbrel, I would be a mess. And, don't even get obsessed with the wild goose chase for a definitive diagnosis, although a bone scan (not density) will show ANY areas of inflammation even in the absence of a high sed rate. I felt like so uncomfortable with the ever changing dx, and the inconsistent test results, until I found just about all of us deal with that. So, u don't have to feel weird. Almost all the doc's patients are like that. So, give yourself a break over that issue...dysautonomia is bad, bad, bad enough...and u don't need the added stress of wondering or hurting. I check this site every few days lately...used to check it daily, now I am too tired. Sometimes, I go a few weeks. So, if I don't respond, I will be back unless this POTS kills me, and I am not too sure it won't, to be honest. I don't think the research has looked much at POTS over time. I have a whole study planned, to include the subtypes (those with autoimmune disease, adrenal problems, etc), and then track over time the interventions for each type and what worked when... I am a professor (or I pretend to be one on TV...POTS has really made me a ditz). I have a lab where I built for high level statistics. I wanted an NIH grant for this, but I am too tired. Anyway, POTS and Arthritis friends, I have much hope for u re: RA. Wish I could say the same for POTS.

wow, sorry that was so long, but I hope there is some good info buried in there. Hugs, Nesh

so, i got some tests back. sed rate was 1. i am shocked! rf was negative. basically everything was negative. it doesn't make sense to me because i clearly have swollen lymph nodes and my fingers are curling. and my hips are killing me. this isn't in my head! but how could i have NO inflammation?

You may also want to get your complements tested. My complements were off but my ANA was negative. Thank goodness for other criteria. Good luck Gracie.. I know you need answers.

So sorry about the disapointing results Gracie, I tried to warn you! At least your ESR was 1, mine was 0 and I can't walk more than a few dozen feet without pain. I assume you've had your CR-P checked as well? What were the numbers there?

Again, SED rate is very non-sensitive for many rheumatic diseases and RF is only 75% sensitive, that means that 25% of people with clinically definite RA have negative RF.

So try to take heart. If your problems are from an infectious source these tests may not be the correct ones anyway. Has your Dr ordered any MRIs of your affected joints? You need to see exactly what is going on with them and x-ray is not sensitive enough to show what is going on with your synovium and bursia. You really need to get a look at them so you can make sure there isn't any real damage going on.

Hopefully your rheumatologist will be a good one who thinks outside the test box. I see mine for the first time tomorrow, I'm hoping the same for myself!

Neshima, thanks for your good long post. I've been concerned about the interactions between the DMARDS and dysautonomia and I see (at least in your case) my concerns may be justified.

I totally agree about skipping all the "first line" tx for these inflammatory arthralgias and I have no intention of getting on the steriod merry-go-round. I've also avoided the NSAIDS so far (other than occasional Tylenol) though my husband (bless his heart) has urged me to use them to get my inflammation down (did I tell you I can be a bit contrary at times?) but with a positive hemoccult of unknown cause (colonoscopy was clear-- I plan to retest and then have them look at "the other end" if it's still positive) I don't think the wise move for me is long term use of those drugs in my stomach.

Both my siser-in-law and brother-in-law have used methotrexate for their Lupus and RA with very good results but my close friend with Lupus had difficulty with it due to the consequent reduced immune gives her a tendency to get very serious respiratory infections. I have another friend with RA who has had very good luck with it, she takes half the dose one evening and the other half the next morning and I guess that really reduces the sick side-effect.

All we can do is try them for ourselves and see what happens. Have you tried Humira yet? I guess it's the same type as Enbrel.

As for not holding out for the difinitive dx, I can agree up to a point. You are very lucky to have a Dr who is willing to think outside the box for you and the fact that you have had arthritis since you were a kid may be the reason for that in part. For those of us who present with lots of "nonspecific" symptoms in our adult years this can be much more of an uphill battle. We need to go in armed with "real" findings before our Docs will stick their necks out for us I'm afraid. Hence why Gracie was so disappointed with her negative tests even though she is obviously suffering some kind of inflammatory joint process. It's incredibly frustrating for us, especially when it goes on for years. I was advised to not even see the rheumatologist earlier on when my hips only hurt occasionally but now that my involvement is a lot more joints I feel more confident that I won't be blown off.

mccaimless - please let us know how your rheumatologist appt goes!
i am very stressed right now because i have decided to move back to east coast, from the west, to help to care for my dad with alzheimer's. i have to leave my doctors, switch insurance to the new state, and start over. who knows when i will get to a rheumy. ahhh!!
i am relieved to hear that coming back with a negative sed rate is fairly common in people suffering with joint inflammation issues. i read it is rare in lupus, so perhaps i can rule this out, but that only 10% of lyme patients will have a positive test. so i'm not giving up. i took pictures this morning of the curling fingers and swelling so that there is clear proof. it tends to dissipate by the afternoon, which is why it is difficult for my doctor to see. the only odd thing is that it is only in one hand right now. both hips, but one hand. odd!!
heather, thanks for your reply. what do you mean about having complements tested? what tests does this entail?
thank you all so much. i am trying to learn. i have a day off today and am reading, reading reading!