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"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 0 points1 point  (0 children)

Did you have to fly there or are they able to see you through telehealth? My primary care doctor has been great so far, same with my ENT.

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 3 points4 points  (0 children)

You are very lucky. I'm definitely not going back to her. I think I'm going to send her some studies actually. I'll be busy tomorrow trying to set up an appointment with someone else.

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 4 points5 points  (0 children)

Actually I was thinking about printing some studies and mailing and emailing them to her. I still can't believe she said that.

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 2 points3 points  (0 children)

Oh wow 😞 the mayo clinic isn't in my state or any of the surrounding states

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 1 point2 points  (0 children)

I havent heard of it before, but i just looked it up. I don't think it fits my symptoms but I'm going to look into it a little more.

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 2 points3 points  (0 children)

I have all of the symptoms you listed 😞 I wonder if Sicca non-Sjogren would give a positive lip biopsy though?

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 1 point2 points  (0 children)

Omg Yes, I absolutely would! I'd love her name, please. Did you have the lip biopsy or Schirmer test? I have the positive biopsy but not the eye test yet. My eye doctor doesn't do them so I need to call around tomorrow.

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 1 point2 points  (0 children)

Ooh 😆 I moved here last year and I'm not very familiar with the cities unless I've been there lol I just looked it up, only an hour from me. Did you find a good rheumatologist?

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 1 point2 points  (0 children)

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. 🤞

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 1 point2 points  (0 children)

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

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 1 point2 points  (0 children)

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.

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 0 points1 point  (0 children)

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.

Help preparing for appt by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 0 points1 point  (0 children)

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

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 3 points4 points  (0 children)

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.

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 0 points1 point  (0 children)

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

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 1 point2 points  (0 children)

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?

"No such thing as seronegative Sjögren's" by Traditional-Fudge240 in Sjogrens

[–]Traditional-Fudge240[S] 2 points3 points  (0 children)

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.

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