[Carol118]

I went to my doctor about waking up at night with stiff fingers. She sent me to a rhumetologist who ran several tests. My antinuclear was 1:320/pattern scattered/SSB-LA positve 1.9 (Sjrogens) and U1RNP was 1.0. My rummy has not given me a diagnosis because he said tests were borderline.

The only other symptom from stiff fingers, is that I have had a couple of times tingling in my arms at night. He has dismissed RA, carpel tunnel, fibromylgia but no tests ran/given. Going back to rummy in March.

Are my symptoms, or lack thereof, typical of Lupus? I am very confused.

 

[Lily]

Hi Carol and welcome,

SSB is more often positive in Sjogrens as you mention. RNP is related to mixed connective tissue disease but only in high titres...........I have no idea where your 'numbers'fall and maybe he is waiting to see what they do before diagnosing formally.

More importantly has he started you on any treatment? Sometimes, especially at first it's difficult to pinpoint which disease process is going on and it's a wait watch and monitor situation. However a doctor will usually medicate to relieve symptoms during that time.

I am surprised that you have not been sent to an opthamologist though to check for dry eyes via a Shirmers Test and Rose Bengal staining and a split lamp exam. That would be a logical next step.

Was a urinalysis run as well as the blood testing?

It might be wise to look at the top of the Not Diagnosed section where the criteria for a Lupus diagnosis are stuck, see if you can identify with any of those. Diagnosing is as much about symptoms past and present as it is about blood results. Really that goes for all the connective tissue diseases, not just Lupus.

Sjogren's can be a very similar disease to Lupus in many ways, it's not just the dry eyes and mouth that we often hear about. It can affect a lot of other body systems in some cases, lungs seem a particular favourite.

Here's a bit of an outline:

http://www.orthop.washington.edu/uw...76/ItemID__55/PageID__4/Articles/Default.aspx

Take care and anything else we can help with let us know.

love
Lily

 

[Maia]

It is a little atypical, usually more symptoms are present such as more joints involved, fatigue, skin rashes, etc. You can read about the varied symptoms of lupus and the diagnostic criteria on the main website.

How long have you had the trouble with stiff fingers at night? How long does it take in the morning until they stop being stiff? Sometimes the answers to these questions can help distinguish between different sorts of autoimmune disorders. Do your fingers look different/red/thickened skin?

All that said, it is quite possible that you are just one of those few that get an accurate and early referral to a rheumatologist and this is your early single presenting symptom, with more to follow. I certainly hope that is not the case for you, and the symptom and blood test results are due to some other short lived problem/cause.

Best wishes to you and ask any other questions you may have... we'll do our best to answer and offer as much support as we can in the process.

 

[mommygiraffe]

Just a quick word of encouragement from an old hand at this stuff. It took the rheumy seven years to give me a diagnosis of RA, then a year later his new partner gave me a lupus dx, only for yet another rheumy at the UofPA to change it to Mixed Connective tissue disease almost two years ago now. My regular rheumy, no. 2, says my mctd is ""mostly lupus" I get bloodwork done every four to six weeks, especially while I'm on an immune system supressing drug, which I'm not on now due to high liver enzymes. But next month I will be put back on one or another. Anyway!!!!!!!!!! It is hard when everything is up in the air like that, and harder still to be a medical mystery. But at the same time hopefully you learn to just keep living your life, keep hoping. And learning. And fighting this crap, even if you don't have a name for it. I have an ANA of 1:1280 the last time, a positive anti Rnp, and at one time had a positive dsDNA. supposedly makes mine MCTD, which can turn into lupus, scleroderma or polymyositis, but can be just as serious as lupus. I've been sick for eleven years. But I wouldn't be the person I am without going through this, or my son's Asperger's. It just is what it is, not pretty, it is awfully scary, and I get pretty p.o'd at it. But there are cardinals and eagles to see flying, my LORD to serve, my kids and husband to raise. I'm a mom. I have stuff to do I keep telling my body. Not that it listens to me, lol. Jen

 

[Monica3]

I have the same thing!!!

Dear Carol,

My lord--so glad to hear that someone else has this horrible symptom (thoug I'm not glad you have them!!!).

A little history for me: diagosed with Lupus almost 2 yrs ago--symptoms were mostly joint/muscle pain in most major joints, malar rash, pleurisy, blood test results. Been on Plaquenil since. Over-time the generalized joint/muscle pain became more focused on my hands/fingers/wrists. Essentially, when it started getting colder here (I'm in Virginia), my hands and fingers got so swollen at night that I was completely unable to grip anything. The pain is terrible. I cannot make a fist because I am so swollen and I get these little nodules under the skin on the pads of my fingers and on the side of my joints of my fingers. ALso, I get these large mound-like swellings on the back of my hands and on the forearm right above the wrists. All this extra swelling created weakness in the wrists during the day (I actually dropped a ski boot on the hood of my car when I was trying to get it onto the overhead shelves--ugh).

Anyway, I tolerated it until the end of December (nothing really helped--I was taking Celebrex and Tramadol and nothing really made a dent in the swelling or pain), when I told my doctor it was not tolerable anymore. I also brought in some info on Mixed connective tissue disease (the medical web-site I read listed the primary symptomsas swollen fingers!!!) and she just ran the RNP blood test along with all my others. I haven't received feedback on the results yet and my Rheumatologist said I could have Lupus AND Mixed connective tissue disease. Of course, it just may be the idiosyncratic way that Lupus presents itself in my body.

So, I have just started a Prednisone + Methotrexate combination in hope of helpig these symptoms (or stopping a flare?). We'll see if this helps at all. I hope so, because these hand symptoms are a huge concern. Scared about Methotrexate, which I will start next week, but hope to get some support here about that.

Can you related to the nodule and strange swellings on top of the finger swelling? It's so bad for me that I need my family members to open my medication bottles at night! I fear that in some emergency I will not be able to help get my kids out of the house or whereever. Not a good feeling to not have usable hands. Oh yea, when I wake up I have residual stiffness and swelling, but after about an hour, I am generally back to normal. It starts all over again some afternoon hours and peaking while I am sleeping.

I hope to hear more from you--I haven't read about this symptoms before there (though I am very new to this site--a week or two).

Hope this gave you something to think about and explore. Keep me up to date.