Author Topic: Positive Biopsy  (Read 4014 times)

Mickey

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Positive Biopsy
« on: January 31, 2011, 08:51:21 AM »
I just wanted to tell you all that it IS possible to have SJS with NEGATIVE bloodwork .  I had my lip biopsy come back definately positive for Sjogren's today.  I've had negative bloodwork for yrs. except for a positive ANA 1:160 and high CRP.  It's been a two yr struggle to get anyone to hear me and I finally got the lip biopsy with a positive diagnosis.  It's really a relief but I already had no doubt that I had this horrible disease.  Don't give up trying to get the help you need.. 

anita

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Re: Positive Biopsy
« Reply #1 on: January 31, 2011, 09:28:46 AM »
Welcome Mickey,

There are actually quite a few of us here with negative blood work and positive biopsy...I am one of many.  I am completely sero-negative and don't even have a positive ANA, yet my biopsy showed complete destruction of the acinar cells and found this typical of sjogren's at end stage (what they actually wrote on the report).  Some people start out completely negative and then sero-convert later in the disease process.

Hopefully you are getting treatment accordingly.

Good luck and feel free to ask questions along the way.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

seren

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Re: Positive Biopsy
« Reply #2 on: January 31, 2011, 12:44:08 PM »
Hi Mickey,

I had negetive bloodwork also apart from a pos ANA 1:160 speckled pattern.  Just like you I battled for a good while and then had a positive lip biopsy, mine read 'mild to moderate infiltration of the salivary glands'  there was no score.  Do you know what yours said??

Its great to feel vindicated, especially when everyone else including the medics think your fine GRR!

Take Care
Paula

kelene

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Re: Positive Biopsy
« Reply #3 on: January 31, 2011, 06:41:54 PM »
I am also sero negative with a positive lip biopsy... my blood is always normal.. and my score was 3

Meld256

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Re: Positive Biopsy
« Reply #4 on: January 31, 2011, 08:32:55 PM »
Mickey,

Welcome to Sjogren's World!  ;)

I know it feels great to feel "vindicated" with what you've known was true for so long, and now you have a diagnosis. I also had no blood markers to prove Sjogren's; nothing. I was finally diagnosed on symptoms.  I know that's not an exact science, but I am now finally being treated correctly and that's what is most important to me.

I hope that you are being treated, or will begin shortly. You are correct.  We all need to keep the fight to get the help we need. Good luck to you and I look forward to hearing more from you.
take care,

Melinda

LeoLady

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Re: Positive Biopsy
« Reply #5 on: February 01, 2011, 01:28:38 AM »
Welcome Mickey!

I'm another one with negative bloodwork and a highly positive lip biopsy.  I sincerely hope you get the medical attention you need from here on out.

Take care.  :)

Hugs,

LeoLady  (Melinda)

Mickey

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Re: Positive Biopsy
« Reply #6 on: February 01, 2011, 05:22:39 AM »
Thanks everyone.  I have not gotten my report yet but I will post more after I read it.  I don't see the Rheumy until April. 

DragonflyC

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Re: Positive Biopsy
« Reply #7 on: February 01, 2011, 07:16:16 AM »
I'm annoyed with doctors calling a 1:160 speckled pattern ANA "negative bloodwork."  Yes, an ANA can be a false or misleading positive up to 1:320, but that doesn't mean that it always IS a false positive or misleading. 

That lab result plus symptoms should be enough to consider treatment, even without a biopsy.  Clearly, an AI process is happening with that ANA and symptoms.  Doctors, of course, should still talk about other options (e.g., gentle exercise, meditation, fish oil supplements, etc.), but if they don't help, I don't understand not looking to more direct treatments.

Now, I'm not a fan of passing out prescriptions for nothing (our use of antibiotics is out of control), but there's minimal individual or public health risk and no risk of abuse or dependency with most of the meds we take (I've always said it would serve a person right if he/she stole my meds and instead of getting high, just got kind of drool-y and sweaty).  I do think it's more difficult for doctors when there is NO positive blood test (even though we all know that it can still be SJS), but a positive ANA and symptoms should not create an ethical dilemma and shouldn't require a patient to jump through hoops for treatment. 

I really wish the medical world would standardize all of this.  It seems like some of us have doctors who get it, but many don't.  I'm so happy that the Sjogren's Syndrome Foundation is working on getting us approved treatment plans, diagnostic criteria, etc.  We clearly need them in order to advocate for ourselves.  Too many people are being denied treatment or having to go through unnecessary and invasive tests to get it.   

Sorry for the rant!  This is just something that gets me fired up.

seren

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Re: Positive Biopsy
« Reply #8 on: February 01, 2011, 12:19:47 PM »

I would never have thought the Docs would say 1:160 was NOT a positive ANA..?  In wales (UK) it is considered a definite positive, I agree, there should be some continuity across the board, its so ridiculous!!!  >:(

BonusMom

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Re: Positive Biopsy
« Reply #9 on: February 04, 2011, 05:15:18 AM »
I was dx'ed with a positive ANA of 1:160 Speckled pattern, positive SS-B, elevated histones and ESR.

Sha

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Re: Positive Biopsy
« Reply #10 on: February 04, 2011, 05:44:52 AM »
Welcome to the treehouse!! ;D

I totally agree....not all the docs can be dumb a**es!  :D I guess it pays to keep telling em that things are bugging us and it is NOT all in our heads!! It is throughout our bodies, also!! ::)

I work in the autism room and I am very active, don't look sick, and push through pain all day, so sometimes it looks as if I am faking it to onlookers (if ya know what I mean)!

The thing is....just cuz we push through the pain, does not mean the pain isn't still there!!

It is hard for anyone to understand that; even our family at times!!

This board is a great support system  since we all know what we have to push through on a daily basis!

Sha

sis

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Re: Positive Biopsy
« Reply #11 on: February 04, 2011, 07:15:18 AM »
Thanks for posting this Mickey.

I'm in limbo w/ no positive blood work.

I know I am getting closer to an answer but some days it is all just too much.

I loved what Dragonfly said...

I do think it's more difficult for doctors when there is NO positive blood test (even though we all know that it can still be SJS), but a positive ANA and symptoms should not create an ethical dilemma and shouldn't require a patient to jump through hoops for treatment.

Ethical dilemma... HA! HA!! HA!   Thanks Dragonfly!  I needed a good laugh!

April seems a long way off Mickey.  Sorry you have to wait so long.

Until then you can try some of the things the helpful people on this board suggest.

I wish you well on a healing path.





sissyjane

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Re: Positive Biopsy
« Reply #12 on: February 04, 2011, 07:40:50 AM »
I'm still not officially diagnosed, and have recently had blood drawn to check for Lupus...My Rheumatologist informed me that 30 to 50% of Sjogren's patients are sero-negative, so at least I have a doctor with a clue. My only positive test so far was a borderline positive ANA.

Sha

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Re: Positive Biopsy
« Reply #13 on: February 04, 2011, 09:56:17 AM »
My rheumy in Seattle and gp says you can be seronegative for just about anything!

My rheumy operates by getting blood work first (44 vials), then dx by symptoms if no positive bloodwork cuz treating symptoms is the end result anyway;-) I like this theory! Plus he said no matter what dx I get...most AI diseases have the same treatment:)

Sha

Spartan1

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Re: Positive Biopsy
« Reply #14 on: February 24, 2011, 05:01:24 AM »
Hi everyone,

I too have been sero negative. I just had a positive ANA. I have so many symptoms. My eyes and memory issues being the worst. I also have joint and muscle pain but no swelling. I am scheduled with the lip biopsy on March. Do you think the biopsy is still necessary? My rheumy said to have it. I am a bit nervous about the procedure .
Just wondering if anyone can offer some suggestions,
Thank You,
Spartan 1