How many times should you be tested???

[colleen]

Hello Everyone, in 2008 after ongoing joint pain in my elbows ( I had the dry eyes and mouth too but at the time had no idea it meant anything) I was checked for arthritis. My ANA came back positive so I was referred to a Rheumy at Mayo who ran more extensive tests.. Positive ANA 1.8 positive ENA (specific antibodies of the ENA... Anti-SSB 1.3) positine Anti-RNP 2.8  my Rheumatoid factor and CCP were Negative. The doctor said at that time I had Sjogrens but she couldn't rule out other connective tissue disease wouldn't show up at some point.

Then in Dec 2009 I was retested by a different Rheumy and now my labs are negative  ANA but positive for the Rheumatiod factor and positive for Histone level which he says is Lupus.  How can your tests vary so much. I am scheduled to have my labs redone in August by yet a different Rheumy for hopefully a third and final diagnoses.

I am currently still suffering from the elbow joint pain( hurts to lift arm at times now) very severe dry eyes even after having tear duct plugs placed. my mouth gets so dry that skin peels like cob webs. I also have an unusual ongoing pain in the front of my foot and the fatigue is getting worse and worse . At 43 I want to do things but find I have to sit in the car and let my husband run into the stores.

I was prescribed Plaquenil however I have not taken it yet for fear it will mess with my next set of labs.

Sorry this is so long but I am frustrated. any input is appreciated thank you,
Colleen

[Suzy]

Hi Colleen,

My ANA has changed a few times in the past few years (well, rather - I've always had it, but the pattern has started changing). I would not worry about the Plaquenil affecting your bloodwork. Some people have said it can, but that has not been my experience. Unfortunately, it's not a cure, so there will still be diagnosic material for your doctors to work with. 

The thing that's consistent is that you seem to have some sort of autoimmune thing going on. It could take a while for the doctors to work out exactly what it is. In the meantime, you have symptoms/pain and you need some relief, so please do not make yourself suffer. Also, keep in mind that Plaquenil does not work instantly - it can take months to kick in.

Take care!
Suzy

[Blue Kat]

I've only had my ANA tested the one time so far, which is what my PCP used to decide to send me to the rheumy who ordered further tests that showed I have Sjogren's...that was just over a year ago. 

[chelle]

Hi Colleen,
You sound similar to me. I'm 43 and have had elbow pain for the last 8 years. It started a couple of years before the Sjog. diagnosis. The dr.s change their minds as to what it is fairly regularly. Some say tennis elbow, tendon inflammation, nerve entrapment etc etc. It hurts when I use it too much, at night and usually I wake up with numb hands in the morning. I Dont take anything for it as nothing seems to work much. I must sleep with my arms straight as if I curl them I'll wake up in agony.The physio I see has given me brilliant exercises which ease it really well. When it flares up I do my exercises and it nearly goes away. My rheumy isn't sure whether it's connected to the Sjogr. or not but I suspect it is. I have only had one set of tests done and they showed high levels of rheuatic factor.

To summarize I keep my elbows under control by not overusing them (husband scrubs the bath!), regular physio suggested stretches & exercises, ice packs when sore, loads of fishoil and flaxseed oil, & hands/arms in special positions when I sleep.

The tiredness gets to me sometimes, regular exercise and not overdoing life helps. As does acupuncture.

Hope this is helpful.

[Joe S.]

As many times as you need for confirmation. While I have had the symptoms for decades and I have had a variety of diagnosis, It has just been in the past 5 years that I have been labeled with Sjogren's. It took them a while because they would say I could have something and I would treat with a method I have not mentioned and the symptoms would disappear for a bit. It confused the Dr's and frustrated me. I have stopped now so I could get a solid DX.

Take care of your self and remember to breathe.

[Pegasus47]

Hi:

there are natural remedies for muscle and tendant pain relief.  Not drug based.  Has anyone ever tried them?

Works for Fibromyalgia.

Pegasus

[colleen]

Thanks to all for your input.

I made a mistake my ANA was positive on my second set of labs. I am going to take a deep breath, relax and promise to start the Plaquenil.


I will keep you posted.

Huggggggggs Colleen

[Joe S.]

Pegasus, which alternative remedies are you talking about?