Author Topic: You've got to be kidding me...  (Read 1791 times)


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You've got to be kidding me...
« on: June 04, 2013, 08:43:54 AM »
3 weeks ago or so I got a call from my rheumy's office regarding some bloodwork.  The nurse told me I definately have SS (I said "really, I

never test positive for anything!)  Her response was that I definately have it.  Not a big surprise to me as I'm symptomatic, and have an aunt

with SS.

Flash forward to yesterday- my follow up with the rheumy.  He sits down, I say "Ok, Sjogrens.  BTW, which antibodies did I test positive for?" 

He gets the paperwork out and says "This is all negative."  Um, what the what?  I said your nurse called me.  Then he showed me a note on the

lab report and said "This is my handwriting- that's what I told her to .  I don't know what I was thinking or thought I saw."  He was very

apologetic and took total responsibility instantly.  This guy is a very respected Dr.

Then again, he went forward to say 1/2 the people with SS don't test positive anyway.  I do have a positive ANA.  He also said the symptoms

still are most suggestive of SS.  He told me that he still believes I have two problems- an auto-immune connective disease, and a

neuromuscular disease.  Then he mentioned that I may yet have lupus.  (I haven't ever tested positive for it, but I don't know much about it or

how common it is to test negative.)  One of my biggest problems is constant fevers with gland pain.  I'm pretty sure he's thinking I have lupus

with secondary SS.  Particularly since at check out I realized he had coded me as lupus.  He kept emphasizing to me that he was going to treat

the symptoms and not worry about a specific dx unless I really wanted a lip biopsy (which he didn't recommend.)  He did put me on plaquenil

and Salagen.  I certainly don't feel like he's blowing me off or minimizing.

But...I'm so darn frustrated because I thought for one, I had a definitive test result!  Story of my life is "probable" in front of everything. 

I'm trying to understand about lupus without freaking out because the descriptions seem more dire long term. 

Thanks for letting me vent!


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Re: You've got to be kidding me...
« Reply #1 on: June 04, 2013, 09:16:53 AM »
Hey, why would you want things to be simple? Good grief!  There was a time when doctors could do diagnoses with a good history and a few judicious lab tests. It sounds like your doctor actually listened to your symptoms and is thinking things through, at least.



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Re: You've got to be kidding me...
« Reply #2 on: June 04, 2013, 10:03:53 AM »
I love that because ART is totally subjective :)


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Re: You've got to be kidding me...
« Reply #3 on: June 05, 2013, 04:56:29 AM »

Don't freak out about Lupus.
I have Lupus, RA and Sjogrens, all of them are autoimmune diseases and often go hand in hand.
If you have any questions about Lupus, I will try and answer them.
Btw, Plaquenil is given for Sjogrens as well as Lupus, so he is doing the right thing.



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Re: You've got to be kidding me...
« Reply #4 on: June 05, 2013, 05:36:56 AM »
All of these autoimmune conditions overlap.

It is fairly common to have  most of the physical problems without confirming blood work.

My first Rheumatologist was very sure I have Sjogren's, without the bloodwork.

For one thing she was looking at ME, My REAL history, My real conditions, and she diagnosed ME.

Not a textbook definition.

Smart, brave, confident (Hungarian and trained at Yale) and YES, a practitioner of the ART of Medicine.

Unfortunately there are so many doctors who don't even know ALL of the textbook information about our conditions that they can't even connect the dots using the textbook, never mind as an art form.


Just saying.....


Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol


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Re: You've got to be kidding me...
« Reply #5 on: June 06, 2013, 08:53:19 AM »
Thanks everyone.  I'm feeling a bit calmer about things because I know I'm getting the help I need.  Debbie, I may take you up on that as I'm feeling pretty overwhelmed trying to learn about lupus.  I good Dr. is worth their weight in gold.  Mine reminded me that he's used to and comfortable working with a situation that is not perfectly diagnosed.


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Re: You've got to be kidding me...
« Reply #6 on: June 07, 2013, 04:14:07 AM »
Many people dont seem to test positive for any of this autoimmune stuff...they dont know enough...seriously.

Like the others said, dont let the Lupus possibility scare you. Its just as bad as SS. My doc said that sometimes the Lupus
is easier to treat as well ,and that SS people have more severe fatigue and the dryness factor and CNS issues are super bad with SS.
Not to say that Lupus is not bad. It really depends on organ involvement etc.
Many of us have the Mix...SS, lupus, and who knows what else.

Is he going to treat you based on symptoms then? I hope so.

52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements