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Sjogren's Syndrome?

Posted by di341 @di341, Mar 25, 2024

Hello,

Man, this aging process....... Thank you for taking time to try to help!

I have a positive ANA and run a higher CRP number, I have for many years. Other than Osteoarthritis, no other autoimmune diseases have been identified. My health is good over all.

Last month I had, what I refer to as a "flare". My whole body was in pain for over a week. I went into my PCP who I've had for decades. Once again she ran blood tests looking for clues.

My CRP had jumped from a previous high of 7 mg/L to 80 mg/L!!!!!!!!!

The only clue was the test for Sjogren's Ab. My result was Sjogren's Anti-SS-A was over 8.0, normal range being 0.0-0.9. The Anti-SS-B was normal range at less than 0.2.

My question is do you need both Anti-SS-A and B to have Sjogren's? Only my A is high. That in addition to a CRP of 80, which I know is very high.

Medicine is such a process of elimination!! Any thoughts you can share with me?

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artemis1886 | @artemis1886 | Apr 29 7:18am
In reply to @gypsyblue "I too have experienced the whole body pain phenomenon! Unfortunately, pain meds was the treatment. Along..." + (show)
Profile picture for gypsyblue @gypsyblue

I too have experienced the whole body pain phenomenon!
Unfortunately, pain meds was the treatment. Along with all modalities that gave relief. Ice, heat, massage, water therapy, hot or cold old, topicals, etc.. Whatever gives relief at the time. My inflammatory markers are always all over the board. I have all the symptoms of Srogrens, but test Seronegative. I had JRA as a child, but my RA factor is negative. The consistent positive is HLA-B27. Even with that, my symptoms are consistent with numerous autoimmune diseases. Most recently I had a severe flare that required the ER and more pain medication that I could ever imagine. My neurosurgeon felt something autoimmune was attacking my cord and said I need to find a good neurologist. I have seen several and they are all good but, they can’t figure it out. The other problem is they all know each other and then the new ones will not see me because I have been seen by others in the same system. My PCP will personally call and explain my situation and the neurologist still will not see me.
That really limits my options.

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@gypsyblue you need a neuromuscular neurologist
Test emg/nerve conduction test
Biopsy- small fiber neuropathy
Spinaltap - CIDP

Neurology is specialized just like orthopedic doctors.
Neuromuscular neurologist specializes in different neuropathies. Some neurologist specialize in seizures, Parkinson’s and so forth. You don’t get the right type neurologist they can’t help you.

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swalex | @swalex | Apr 30 6:18am

Hi @di341,

I can relate to Sjögren’s syndrome. Recently, I came across a very detailed explanation, not just scientific papers, that might help you better understand the many connections within the body.

URGRNT Sjogren’s Syndrome Primary vs Secondary Symptoms You CANNOT Ignore Could Save Your Life


This may give you more details.

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