Author Topic: Testing  (Read 674 times)

su-su

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Testing
« on: May 11, 2019, 03:39:31 PM »
Hi all.   I have all the symptoms of Sjogrens but over the years have tested negative to SSA and SSB antibodies,  ANA and associated testing. 
I do test positive for Lyme Disease and know that LD can cause same symptoms as SS.
I also have CVID - immune deficiency - but still make antibodies to infections.

Past weeks I've had an increase in dryness symptoms and feeling worse overall.
I went to my GP for possible UTI.  No UTI via urine test.  Exam showed severe vaginal dryness and atrophy. 

I also have Interstitial Cystitis - and was/am having a flare of that.
Which reminds me - when I have IC flares it seems my dryness issues get worse.   (eyes, mouth, etc).  Is there a connection there?

I asked my GP to do testing for Sjogren's - thinking if a flare - a higher chance of getting a positive result - if I do indeed have SS.   

I thought she would do the SSA and SSB antibody tests along with an ANA.
She only did the ANA which was negative.
I was so upset she didn't order the SSA and B tests.
She said the tests expensive and if ANA negative that would mean Sjogren's negative ie no need to do the SSA and B tests.
I know that's it's possible to have Sjogrens and test negative.
I have not done lip biopsy.   

I guess my question is with ANA negative no reason to do the specific SSA and B tests?
And......connection between IC flares and dryness flares?
Tks so much,
Susan

su-su

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Re: Testing
« Reply #1 on: May 11, 2019, 04:20:00 PM »
I think I posted these questions in the wrong place.   Sorry.  How to move?  Tks.

Carolina

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Re: Testing
« Reply #2 on: May 12, 2019, 04:29:06 AM »
Hi su-su,

I think they're in the right place.

I sympathize with you, and have the same conditions.  My immunologist (Duke University) diagnoses an Immune Disorder (NOT autoimmune, but functioning much the same way).

My immune system doesn't attack my body with antibodies (like in Sjogren's and AUTO immune disease).  Instead my immune system uses OTHER biochemicals that are part of the Immune system's Fight against outside infections.  Except my Immune System uses these biochemicals (probably cytokines, to be technical) to attack and severely damage my body.

So far:

Moisture system damaged (Like Sjogren's) (2002)
Interstitial cystitis (2007
Anemia (2007)
Meniere's (2007)
Profound Peripheral Neuropathy (2010)
CVID (2012)
Small Fiber Neuropathy (2014)
Small Airway Obstruction in my lungs (2014)
Damage to my gastrointestinal system (esophagus, small intestines)

CONSTANT state of Inflammation, which causes pain, fatigue and depression.

I also have severe osteoarthritis, but my horribly painful knee joints cannot be replaced because of the neuropathy in my legs, and the inflammation in my body which would slow recovery.

I think you might be wise to give up a diagnosis of Sjogren's, and accept that you have the kind of Immune Disorder which hasn't been officially 'named' yet, but is just as damaging.

One of the important points is that since my Immune Disorder is not autoimmune, I would not use the usual immunosuppressants.

I never produced significant autoantibodies, su-su.  But now I know everything that is 'wrong' with me is the result of attacks by my immune system on my organs/systems, just like happens in Sjogren's and all the other AUTO immune conditions.

I could be wrong, for you, of course.  But we both have CVID and we both have the horrors of Sjogren's but never test positive.

Regards, Elaine
« Last Edit: May 12, 2019, 11:57:58 AM by Carolina »
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

markt

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Re: Testing
« Reply #3 on: May 12, 2019, 05:31:06 AM »
Get tested for antibodies to PSP, SP1, CA-IV, and CA-6.  Also, get your complement and immunoglobulin counts checked.  There are other relevant antibodies in PSS that are just now being fully appreciated.  The bausch and lomb sjo test is your best bet.

su-su

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Re: Testing
« Reply #4 on: May 12, 2019, 11:16:34 PM »
Thanks your kind replies.   
Will study - and probably think too much.  As usual.
I've not heard of some of those tests.
I know Lyme Disease can cause dryness issues.
I find it hard to believe that all my symptoms point to SS - and I most def. have Lyme Disease.   Negative to everything SS-related so far.     I was OK one day and the next wasn't.   
Insane to think within a span of weeks I had both SS and LD.
Does the Dx neg. or pos. for SS matter?  It shouldn't but for me it does.  I don't know why.
Also - around same time I started getting the horrible symptoms my bloodwork showed some changes - things becoming abnormal.     Globulins low - A/G ration high.    LD can do that - wreck immune system.
Dx'd CVID.         

Elaine - I "know" you from other boards - know you also have CVID. 
Have read that SS "can" cause increase in total IgG levels.
Yet for example you and I show decrease in total IgG.

So tired - and so tired of all of this.
Thanks again for your kind support.
Susan - will return...........

su-su

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Re: Testing
« Reply #5 on: May 12, 2019, 11:22:20 PM »
Mark - a quick google search showed the above mentioned tests - but for "early Sjogrens Dx".   
PSP CA-IV etc.     Does that mean a "no go" for someone with symptoms for years?    Tks, Susan   

markt

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Re: Testing
« Reply #6 on: May 14, 2019, 04:24:57 PM »
If you are just starting out, the Sjo test by B&L will test for relevant biological markers that are known.  The lip biopsy and SG ultrasound are also VERY valuable if done/interpreted by the right people.  This is all true whether you've been symptomatic for years or not.  Nothing to lose by pursuing this..