Am a Newbie, Also new SS DX -- But, is it correct? Suggestions please.

[Parrot Pal]

Hi.
Am new here, 49, female.  

Yesterday the rheumy I saw at Mayo called me (back home) to say that based on the blood tests, I have Sjogren's Syndrome.  He explained a lot about the condition and is mailing me an RX for Plaquenil along with info for me to consider.  The question - can the rheumy be sure from the labs that it is Sjogren's?  

I have complained of daily dry eyes during every annual visit to opthomol, but not the sandy/gritty type (except occassionally).  I don't consider myself as having dry mouth (no dental, gum, blister, sores), but do have dry lips most of the time, some times very cracked.  Maybe I don't know how dry is SS dry for saliva.... I have saliva in my mouth and can produce it whenever I want.  Ocassionally, I feel "cotton mouthed" where I even have said "I feel so dry."  My nasal passages are just about always dried out.  Dr. did not even mention the dry eye, dry mouth tests that I just read about.  

Abnormal labs:
ANA 1.1 (normal is 0 - 1.0)
SS-B/La 4.1 (normal is 1 - 0.9)
RF Quan 85 (normal is 0 - 14)

All other blood normal.  

Can it *ONLY* be SS with those labs?  Or can it be something else.  

Do you know how high those numbers actually are compared to others with SS?  

Have been on leave from work in Sept. 2010, chronically exhausted (which started about 2 years prior but got much worse), with little spurts of energy after a couple/three days of just rest rest rest.  With activity comes anxiety.  Started on low dose wellbutrin for that - seems to have helped.  Aches and pains in joints, muscles, even in stomach/digestive system, just moves around and flares up for no "obvious" reason, even bottom of feet sometimes.  Episodes I ignored over past 2 years are just chronic and debilitating now.  

My recent bout of illness and visits to the docs and the Mayo since Sept. have come up with these DXs in this order:
Dysautonomia (2 tilt tests and other autonomic reflex tests), Neuro-cardiogenic phenomenon, Inappropriate Sinus Tachycardia.
PVC (lots of them from a 3 week cardio monitor), with bradycardia and tachycardia
Confirmed Hypermobile Joint Syndrome (always knew I was double jointed)
Central Sensitization Syndrome / Fibromyalgia
Migraines

Since there is overlap with some of these DX's, I wonder if the SS can be one of them, or is it definitive with the blood work.  

Thanks so much for taking the time to read.  I greatly appreciate replies and suggestions.

Wishing you all well.

[genko_b]

Hi and welcome:

Others on this forum have medical credentials and can offer you information on the bloodwork and other tests you had done. But the symptoms you are describing put you squarely into the Sjogren's ballpark. Everyone experiences the disease somewhat differently, and you will find the whole range here.

What happens with some of us is that the doctors may find additional auto-immune conditions over time, based on tests and symptoms, so that the label you get may change from "Sjogren's" to "Sjogren's/something overlap, " or "something with Sjogren's secondary."

Many of us are on Plaquenil. It takes several months to determine if it is helping, so you really have to be patient with it. If it helps you, it is worth it. There are also many drops you can use to moisten your eyes, and products for your mouth.

Use the search function at the top of the page to look up threads that may provide you with more information, feel free to browse, and to ask any questions at all.

Take care,

Genko

[Parrot Pal]

Thanks, Genko. 
It has been a bit overwhelming having so many doctor's appointments and tests over the past few month, then to start getting DX after DX is even more than I can comprehend.  I think that is where my doubt and skepticism comes from.  But I am also a realist, so there is a bit of push and pull going on with me in accepting all this. 

Is the Plaquenil for specific symptoms, i.e. is it primarily for the dryness, or is it also for the aches and pains?

[Katybarstool]

High ParrotPal and welcome to the family.

I have been takin Plaquenil for just abut six months, and it's mainly helped with the awful tiredness. I think it may also be helping mymouth, but I'm not entirely sure about that.

Kathyx

[Carebear]

Hi Parrot Pal,

Welcome.

I've just begun taking Plaquenil myself.  My Rheumy told me it may help with my dryness, fatigue, and neurological symptoms which include brain fog.  I know that others have had a mixed bag of results, but I think it's worth taking if it can improve my quality of life in any .

[Bucky]

Hi Parrot Pal,

Welcome to Sjogren's World. 

Hmmm . . do you by chance have a parrot?  And if you do, does he/she talk?

I hope you find this site helpful to you as you are starting out on your Sjogren's journey.  There is a lot of information here from our worldwide membership that makes up SjS World.  If you put a specific word or topic in the search box to the top left of this page it will take you to previous threads about that subject.

Also check out the links page as there is a wide variety of information there that might be helpful to you.

Welcome,
Bucky