Sjogren's Syndrome

Left a follow up with my PCP feeling confused. I can’t see a rheumy for a second opinion until February so in the mean time she wants me to see a neurologist. Ok cool.

I have suspected Sjorgens (sicca dry eyes, positive ssa, joint pain and other stuff) but my PCP doesn’t feel comfortable diagnosing it. The eye doctor said I could have it but told her in the notes it’s not likely (why didn’t he tell me that!)and an ent said no even though I have a dryness. My PCP said it’s not likely but still possible so she leaving the SSA as active in my blood work even though I’m not presenting enough. What does any of this mean. Like I feel like I’m being questioned about all my symptoms. I can’t make up blood work results! Why can’t they just run blood work again and see if anything changes. Just frustrated. Vent over.

15 Answers

Answered Nov 9, 2017    reply

I totally understand!!

Answered Nov 9, 2017    reply

It’s like she thinks it’s nothing but won’t say it *or* thinks it’s something and won’t say it. Just tired of looking like I’m crazy.

Answered Nov 9, 2017    reply

The Neuro Dr I went to yesterday makes me want to have a different Dr and I am thinking about changing. I have all the signs and they just look at me like I'm crazy. I want help

Answered Nov 9, 2017    reply

Varnado I understand, positive blood work, confirmed dry eyes, joint pain and that’s not enough.

Answered Nov 9, 2017    reply

My gi Dr is trying to cover everything...but I know the Neuro Dr from years ago with my son...and she was soo descending...since I'm in the medical field...I was like oh no you don't...my gi Dr is more understanding...he wants to cover all bases and not miss anything...but others just don't want to believe me.

Answered Nov 9, 2017    reply

Varnado at least you have someone on your side!

Answered Nov 9, 2017    reply

I know...my cardio Dr shook his head today..been like Neuro...doesn't believe me..I pray you start getting some help somewhere

Answered Nov 9, 2017    reply

Varnado thank you!


Answered Nov 9, 2017

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Answered Nov 9, 2017    reply

Thank you for your reply. Living in limbo of do I or don’t I have it is very stressful. I feel like I can’t tell them any new symptoms bc it throws then in a different direction. I hope the neurologist can shed some light.!

Answered Nov 9, 2017

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Answered Nov 9, 2017    reply

I went thru similar. It was my neuro who sent me for a lip biopsy that was possitive for sjogren's syndrome. I also have Pots and Dysautonomia because sjogren's syndrome was untreated for so long and left permanant autonomic nerve damage. Good luck, i hope it all works out for you.

Answered Nov 9, 2017    reply

One on hand I’m glad to hear I’m not alone in this. One the other hand- im sorry the process has been so rough. Hearing your neurologist was helpful gives me hope.


Answered Nov 9, 2017    reply

How very frustrating! I'm sorry you're going through this!*hugs*

Answered Nov 9, 2017    reply

Thank you


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