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Possible Sjogrens?

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Sjogren's Syndrome
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Posted 7/16/2014 12:53 PM (GMT 0)

I went to see the doctor back in March because I having strange chest pains/discomfort. She ruled out heart issues and sent me to a rheumotologist. The rheumotologist did blood work and told me she thinks I might have costochondritis. 

It's not a pain that is constant and I feel it when I bend over to tie my shoes or when I sleep on my side or sit forward with my shoulders inward. What happens is when I go back into the original position, it is like I am pulling my chest open (like I have to stretch it) to get it back to normal. 

so she gives me the predinozone pack to take to see if it take the chest pain away. As of today, I still have the chest issue.

The blood tests all came fine except for the Vit. D which is low and the ANA titer which was 1:80 and had a atypical specled nucleolar pattern.

She said we will talk in August when I return for my follow-up to discuss doing a lip biopsy to see if I have Sjogrens.

Other issues I have are degenerative changes (arthritic) in my neck, hips and knees. 

I am having new things going on also: pain in my ankles and feet, shin pain that wakes me up at night, a sudden pain through my shoulder and other things that pop up every now and then that I can't think of off hand.

I wondering if I could possibly have sjogrens and these are all things that go a long with it or could I just have arthritis and it is affecting many areas of my body. 

Also, I do have really bad stiffness and pain when I sit too long, I have to stand and move very slowly until I get going. Also, have pain in my fingers and hands.

Any input would be appreciated.

Thanks!


Post Edited (Debicat) : 7/18/2014 9:35:42 AM (GMT-6)

Posted 7/18/2014 2:38 PM (GMT 0)
Would like to try and help you out, but you deleted your post? This is a great forum, just not as active as some of the others on here...Should you need help, please posts, we can offer up support and help, possibly...Sjogren's is not an easy diagnosis nor easy to dx, as it has a blood test and lip biopsy...maybe ask about getting the bloodwork done and go from there...many well wishes to you...
Posted 7/18/2014 3:37 PM (GMT 0)
Chartreux

Thanks for letting me know.  I don't know how I deleted it.  I just readded it.  Thanks for your support also!

Posted 7/18/2014 4:06 PM (GMT 0)
Sjogren's may not be affecting the mouth, in which case a lip biopsy is not useful. Here are the other ways of diagnosing Sjogren's.

www.sjogrens.org/home/abou-sjogrens-syndrome/diagnosis

Symptoms vary from person to person but may include:

a dry, gritty or burning sensation in the eyes
dry mouth
difficulty talking, chewing or swallowing
a sore or cracked tongue
dry or burning throat
dry or peeling lips
a change in taste or smell
increased dental decay
joint pain
vaginal and skin dryness
digestive problems
dry nose
fatigue

Your symptoms don't seem like Sjogren's would be the best match, but your rheumy should be able to get to the bottom of this and help you out!!
Posted 7/18/2014 4:59 PM (GMT 0)
I must have been out of it when I typed the original message. I do have symptoms of Sjorgrens, I guess I forgot to include that in my post. I have dry mouth and have chewed gum for years because of it. My eyes burn constantly and dry so I use some eye drops to try to help with that. I am tired alot and have pain in different areas of my body. That is the reason the doctor did the blood work to check for sjogrens. She just didn't seem helpful with it all so I came to the forums to see more about it.

Thanks again!
Posted 7/18/2014 6:27 PM (GMT 0)
Sounds like your doctor is not working good with you, and that's very important; getting a good doctor patient relationship, if this is the case seek out help with another doctor. You want a doctor that'll work with you, to get you the best goal of getting the correct diagnosis and relief. So seek out another opinion with another doctor, you have to trusts your doctor. That's the important part in all this, trusts...

Could be primary Sjogren's with Fibromyalgia...Fibro usually cause costo and costo hurts, however it is usually helped with a moist heating pad. Try a moist heating pad when you have the chest pains again.

You can read up on the lip biopsies on here it's not easy, for me they took 2 to 3 samples and missed on the numb medication and the only real relief was ice cubes...plenty of ice cubes...oh, a ENT usually does the lip biopsy so you'd be referred out to an ENT (Ears, nose and throat doctor) However, if your doctor is okay with treating you without this tests of the lip biopsy then skip this, lip biopsies results can vary even from tech to tech on how they read it, My lip biopsy was inflammed but not inflammed enough which two Specialists disagreed with... I would not recommend the lip biopsy in any way...ever...
Posted 9/8/2014 9:10 PM (GMT 0)
sounds more like arthritis or another autoimmune that could cause polyarthritis. now ppl with autoimmune can get secondary sjorgens. but the sjorgens main symptoms are dry eye , dry mouth, dry skin, etc. i get dry eyes with my arthritis and i have Ankylosing spondylitisand a positive ana 1:160 nucleolar they dont know what caused my ana positive. but i only get dry eyes not dry mouth. youd have to have dryness all over to have primary sjorgens. have her test for all the autoimmunes as well as ra factor and all that.
Posted 9/18/2014 5:35 PM (GMT 0)
OK, sort of lost here. I have been in a decline since November 2013. Started with neuropathy type symptoms starting in my feet. sudden onset. Not diabetic. The pain has crept up both legs and thighs bilaterally. Weakness and an ataxic gait. All testing to date has been negative. Have very dry mouth, dry throat, dry vaginal mucosa ( I am 64y/o, but was not like this 2 years ago.) Have seborrheic dermatitis of face and scalp. Severe constipation. Severe dry eyes. Dry skin, scaly Eye Doc told me to use preservative free eye drops only. I am not tolerating well, cause more irritation. Last testing that included sjogren blood test was in 10/13. But symptoms so sound like sjogrens. Have severe allodynia in my knees. Can not tolerate cold, overall, but severe pain when knees exposed to cold, like air conditioning, or changes in barometric pressure. Hurt all over. Overactive salivary glands. Face feels stiff, inelastic. DO take several medications that have strong anti-cholinergic effects, so that is a differential, but am tapering from first of these drugs, without a change noted. Can anyone help me navigate these patients or give me input to these complaints?
CBC normal with modest increase in eosinophils. Comprehensive Metabolic Panel essentially normal.
Am a retired R.N., but specialty was Psych. But have done much research since this began. But as I said I am lost and confused. Rheumatologist can not see until December. Have had appnt. for past 2 months..can not believe it takes that long. Thanks in advance for feed back

Post Edited (journey back) : 9/18/2014 11:41:30 AM (GMT-6)

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