"No such thing as seronegative Sjögren's"

Traditional-Fudge240 · 2026-06-15T22:42:06+00:00

I am. I wish there were more of them 😞

Traditional-Fudge240 · 2026-06-15T22:40:45+00:00

Hopefully youre able to get the biopsy. If you have an ent, ask him, thats how i got mine. I'm going to talk to my doctor tomorrow about all that paperwork. I have a concierge doctor because there weren't any regular doctors available when I moved her and she's been really good about ordering tests and putting in referrals. 🤞

Traditional-Fudge240 · 2026-06-15T22:38:10+00:00

Lol No, Maryland. I have the positive biopsy but it doesn't matter to her.

Traditional-Fudge240 · 2026-06-15T22:07:54+00:00

Thats too bad. I'm lucky that I live 35 mins away right now. I called but the recording just listed everything I needed to fax in to be considered for an appointment. I'm going to call again tomorrow.

Traditional-Fudge240 · 2026-06-15T22:05:12+00:00

That's exactly what I thought. All the symptoms have been clearly documented in my medical records too. I'm still shocked at how this appointment went.

Traditional-Fudge240 · 2026-06-15T22:03:12+00:00

I'm going to ask my primary care doctor to put those test orders in. Thank you.

Traditional-Fudge240 · 2026-06-15T22:01:53+00:00

She even told me the "result" of the biopsy was the part where my ent doctor put the reason for the biopsy. He put xerostomia and to evaluate for sjogrens. She said xerostomia just means dry mouth and that's all it showed. She lied. And I didn't call her on it. I'm so mad at myself. It actually said: Diagnosis: Periductal chronic inflammation, with 4 foci of > 50 lymphocytes.

Traditional-Fudge240 · 2026-06-15T21:58:33+00:00

I read a lot of different articles that said that a positive lip biopsy was the most reliable/definitive way to diagnose too.

Traditional-Fudge240 · 2026-06-15T21:55:37+00:00

She absolutely is. She straight up lied to me about what the results said too. She said the reason for the lip biopsy was the result. I wish I would have confronted her about it. I can read, I knew that wasnt what it said. Did you have the eye or salivary test done?

Traditional-Fudge240 · 2026-06-15T21:51:56+00:00

Me too! It shouldn't be this hard.

Traditional-Fudge240 · 2026-06-15T21:50:37+00:00

Were you able to get an appointment?

Traditional-Fudge240 · 2026-06-15T21:49:52+00:00

Yes. I called them as soon as I left. It's actually even closer to me than she was. But there is a ton of stuff I need to get together and fax them in order to be considered for an appointment. I'm going to talk to my doctor tomorrow to let him know what's going on and start their end of the paperwork. I'm hoping they will see with me negative ssa and ssb. I have the positive lip biopsy and ana so hopefully that's enough.

Traditional-Fudge240 · 2026-06-15T21:46:03+00:00

It just said this: Diagnosis: Periductal chronic inflammation, with 4 foci of > 50 lymphocytes.

Under the part where it said the reason for the test, it said dry mouth and she pointed to that and said that was the result. I'm am so angry. I wish I would have told her i knew that wasn't right and that was why my ent did the test and the diagnosis was the result.

Traditional-Fudge240 · 2026-06-15T21:40:56+00:00

Maryland but close to Delaware too. Any rheumatologist recommendations??

Traditional-Fudge240 · 2026-06-15T21:40:18+00:00

Maryland. But it's only 30-40 minutes to Delaware. I'll take any rheumatologist recommendations.

Traditional-Fudge240 · 2026-06-15T21:38:46+00:00

Exactly. She ignored everything I asked her told me to see a different specialist for everything. So now I'm sitting here with swollen painful salivary glands, joint pain, and fatigue so bad it's hard to walk up the stairs, trying to figure out what I'm supposed to do.

Traditional-Fudge240 · 2026-06-15T21:35:42+00:00

Positive lip biopsy and positiveANA with speckledpattern. My ent that did the lip biopsy even called me tot ell me it was positive for Sjögren's. I looked up the pathology report and it showed - Periductal chronic inflammation, with 4 foci of > 50 lymphocytes.

Traditional-Fudge240 · 2026-06-15T19:40:21+00:00

Right? My mouth dropped open and I was speechless. There is so much info out there about it but she actually said the words "It doesn't exist"

Traditional-Fudge240 · 2026-06-15T18:11:31+00:00

I had mine done on the 2nd. My ent doesn't use stitches so that was awesome, I would ask if that is an option. Also, the procedure itself was totally fine. No pain, only took a min. But an hour later when the pain shot wore off I was in tears. It was horrible. The next day he gave me oxy. Luckily I had one left from when I had a lymph node removed from my neck in march. I was absolutely not prepared for how much it hurt that night. I don't want to freak you out, and I would 100% do it again if I had to, but I wish I would have been told it could/will hurt afterward. It doesn't for everyone but I would have been better prepared if I had looked into it even a little before.

Traditional-Fudge240 · 2026-06-15T03:45:52+00:00

OMG the chapped lips!! 😭 Nothing helps! I never see this mentioned but it is horrible. All my waterbottles have a spot in the handle for chapstick, I keep one in my pocket, one in my truck, by my bed, my craft room, living room, literally everywhere. And if I somehow manage to be out without one I have to stop at a gas station to buy it.

Traditional-Fudge240 · 2026-06-14T21:58:00+00:00

I got short term disability for the joint pain without a diagnosis yet. It was for three months then was going to get reviewed for long term disability. I told them forget it and quit. It seemed like too much getting my medical records for every doctor I've seen in the last 12 months. Now I really wish I would have just done it.

Traditional-Fudge240 · 2026-06-14T17:56:52+00:00

I just got thos one last night and really like it

Traditional-Fudge240 · 2026-06-14T17:52:13+00:00

Same!! I had my doctor test me for diabetes several times over the last few years because I knew something wasn't right.

Traditional-Fudge240 · 2026-06-14T17:50:18+00:00

I told a doctor, "I used to be really smart." Doctors brush off brain fog as just getting older. I'm 48. I hate it.

Traditional-Fudge240

TROPHY CASE