Official SJS Member Now

[Pisces24]

Well, I just got back from my first appointment with the Rheum. doctor and it is official that I have Sjogren's.  I have both the Anti-SS-A and Anti-SS-B antibodies. He ran a Schirmer test on my eye which I flunked. My eyes don't bother me at all but I guess my tear production is practically zip. He suggested over the counter eye drops.

He did find a rash on both feet   but the rash was disappearing. He said it might be SJS related but if the rash came back to call  and he'd have the dermatologist test it. Feet don't bother me at all - just looks like a bunch of red dots on the bottom of them.        He also thinks my "allergies" are really SJS related - not allergies at all. My blood numbers are just abnormal - not really bad but abnormal. The plan is to monitor me for now. He also adviseed that there is a much higher chance of me developing lymphoma but since I am being monitored they can catch it at an early stage if and or when it happens. 

Doctor thinks my rash and dry lower lip are a progression of the SJS. Evidentially it is a slow progressive disease. As to the rate of progression, he can't tell me as it is different for everyone. So I am in limboland there and don't know what to expect for the future. But I guess everyone is that way.

So for now, welcome a reluctant member to the SJS club! 

[Linda196]

Now I don't know whether to send a card of congratulations or one of sympathy!

It's good to get out of Limboland, but no one wants to have SjS...I guess it's the "good news/bad news" scenario. At least it sounds like your rheumy is on the ball, aware of the idiosyncrasies of the disease, and willing to admit there's more to it than dry eyes and mouth!

[eyeamdry]

Pisces, at least you know what it is you have!  It has a name.  You'll probably get some other stuff that may not have a name, lol.  The shirmer's test is really not all that helpful sometimes.  Just be sure you use artificial drops when you become dry. 

As for your feel, I have an idea.  Psoraisis, perhaps.  I was dx two years ago with SS.  About a year ago, I began to have some itchy dots and thick skin on one foot, especially on the botton.  I'd never had any skin problems with my feet before.  I happened to be at my dermatologists office and showed him my foot and he said "yep, it's psoraisis."  It's not bad and doesn't seem to spread much.  I'd also guess the dry lip is from Sjogrens. 

Welcome to Sjogrens World!  Lucy 

[Chickpea]

Welcome Pisces!

We can all understand your reluctance to join us but, as someone who lurked in limboland for too long, I have to tell you that it's better to be here with a diagnosis than out there in the cold.  It doesn't make any difference to symptoms of course, but somehow it feels better to be 'normal' with a load of people who aren't that 'normal'!!!

Any news about treatment?  Let us know what meds your doctors prescribe and we'll help you through the possible side effects.

Try to be optimistic about the future.  None of us knows what to expect but there are all sorts of treatments being researched, some great doctors dedicated to helping, and Sjoggies as advocates for change.

Thinking of you - Chickpea

[Scottietottie]

Hi Pisces 

So - you got the label. It's always a bit of a shock to the system. I remember it well. Part of me was relieved and part of me was really quite upset, which I hadn't expected.
A couple of weeks later I kind of had a 'flash' and thought - well actually - nothing's changed. I'm the same. Circumstances are the same. All that's changed is the label. Maybe docs won't write me off as a hypochondriac any more. (And most haven't!! a plus)

Take care - Scottie 

[KYMOM]

Pisces,  Welcome.  Knowing is better than running around chasing answers.  Don't know about others but I had never heard of Sjogren's until one of the specialists mentioned it as one of two possibilities.  This thing is another of the "one day at a time".
Roxanne

[Calli66]

When I got the blood test results back positive for SS-a SS-b, I was relieved at the Sjogren's diagnosis, because a month earlier a hematologist had told me I had "textbook Lupus." Now that just blew me away. So hearing Sjogren's seemed like not so bad to me. The Rheumatologist said I don't have Lupus.

By the way, it was my "off" CBC blood results that sent me to the Hematologist---which goes along with having SjS. I had terrible dry eyes, too, but hadn't made the connection to Sjogren's yet.

Calli

[forest]

Hi Pisces24

I am glad that you have some answers, so that you know what it is you are dealing with. I think for me, not knowing is the worst part. I have some appointments in the next couple of weeks which I hope will result in some answers for me as well.

Take Care
Scott

[wednesday mc haggis]

pisces

well youve had some great replies!  yup i can well imagine that its a very mixed blessing, but good news is you will now be treated and hopefully get some relief and some answers, down side its is SJS and you ll have some emotions to go through , but as scottie says not much has changed, its there and its been there for a while, just now there is no getting away from the fact that it is what it is.

thoughts with you that you get your head around it, and get some much needed treatment and releif

T x