Joining the club

[warmwaters]

Hi - just got a note today from my rheumy confirming a diagnosis of Sjogrens, so it seemed like a good time to say hello.

My name comes from something that makes me happy - warm waters. Whether its a pool, a bath or some tropical ocean water, I always feel better around (or in) warm waters. Since I get the feeling there are going to be some rough times ahead, figured I'd pick a name that makes me feel good.

I'm not really in shock - have suspected for the past two months that I has either lupus or Sjogren's, based on some preliminary tests, so this is more a confirmation, and in a sense, a simplification. Of course, these diseases can overlap, but Sjogren's makes sense.

Relatively speaking, I got very lucky in the diagnosis process. I had been having a series of bouts of bad diarrhea, and would get very exhausted. Almost flu-like, unable to move, muscle weakness, etc. Happened 3 times between August of last year and March of 2009. In March, had another bout, and couldn't get it under control.  Luckily, I has a very aggressive GP, who felt "This isn't normal, let's figure it out." After a lot of GI issues were eliminated, and we got the diarrhea under control, I was still exhausted, couldn't concentrate, and had what I now know to be "brain fog".  She kept throwing tests at me, and I popped up positive on the ANA and on SS-A and SS-B.  She got me into a rheumatologist pretty quick.   Tried Prednisone and Plaquinil, and started feeling better (not great, but way better than where I was, which was in couch potato land).

In the middle of all this, my partner lost his job, and we had to relocate from Seattle to CA. Luckily, I was able to set up an appointment with a new rheumy here.  The previous guy was fine, but this dr really is sharp. She went after some far more detailed tests, and is pretty confident the Sjogren's is the primary issue, and that I may be able to come off the prednisone.  So not only am I in a better climate, but I think I've found a good doctor. And we all know how important that is.

So I feel lucky in the diagnosis process - less than 6 months, which based on the stories I read is very good indeed.

More later - I have questions, but just wanted to say Hi!

[Scottietottie]

Hi Warmwaters 

Welcome to Sjogren's world. It takes a while to adjust to a dx like SjS even if you have suspected it. A bit of you must have hoped it was something else. Something that would go away. It is better for it to have a name though!

I'm glad you have good docs. makes a big difference!  Hope you find the site useful.

Take care - Scottie 

[Pisces24]

Glad you have a great GP.  My great GP started the ball rolling for me in 2003. He knew my blood numbers were off and durn it kept sending me to "so called specialists" until someone made a diagnosis. It took 2 years (of drs giving me emotional H) and in 2005 an internal med specialist diagnosed me with indolent lymphoma.   Fast track to 2008,  internal med specialist left the area and sent me to an immunologist who ran the test for SJS and BINGO!  I have both A&B and evidentially tested high for it. So took 5 years correctly diagnose me.  Not on an meds for it.
Thankfully I don't/didn't have the symptoms that you are describing but they say here everyone is different. I don't have GI issues but do have a nervous stomach. With me my blood #s are off, terrible teeth cavity problem, dry lower lip, easily gotten sinus infections and some fatigue.

You mentioned about "bouts". I had a couple strange bouts myself in the past that I now think might have been SJS related.  1) extremely sore whole leg muscles to the point I was taking baby steps.  After ca 2 days I could finally walk ok without acute soreness . Took a month before I was back to normal  2) I had a 2 wk instance of where anything I ate had a 50/50 chance of staying in my stomach - ie diarreha. Didn't hurt a bit just the "oh no and sprint to the restroom".

Odd with some of us there is not the shock. It is just finally the right label being given to what we have - almost a relief.  Hey with me Sjogrens is a heck of a lot better diagnosis than a lymphoma one. So I am counting my blessings. Welcome to the group!

[warmwaters]

Sure would like it to be something where I can do a course of treatment and be well.   There's  lots of questions in my mind, of course... will I be able to work again, and if so can I do the work I did in the past, which was very demanding.  What does this mean to all the great vacations I was going to take now that I had found someone to travel with? Etc. etc. But I'm trying really hard to see the upside of things right now, which is not always my natural way.

;)Don't worry, right now I'm trying for patience and the glass half full. We'll see how well I can sustain it!

Hi Warmwaters 

Welcome to Sjogren's world. It takes a while to adjust to a dx like SjS even if you have suspected it. A bit of you must have hoped it was something else. Something that would go away. It is better for it to have a name though!

I'm glad you have good docs. makes a big difference!  Hope you find the site useful.

Take care - Scottie 

[lynnmarie219]

Hi Warmwaters and welcome to Sjogrens World!


I'm glad to hear that you have found a good doctor and have been diagnosed in a short amount of time. I was also lucky in that area as I had doctors who wanted to get to the bottom of my issues and I tested positive in my labs right away and also had a positive lip biopsy.

Its not like we want to be sick...but its always nice to know up front what we are dealing with so we can educate ourselves and get on with life!

Read all you can here and I hope the information in all of the posts is  helpful to you. You will also come to find so many knowledgeable and kind people here from all over the world who will offer support and friendship!

Welcome to the family!

[kimbo]

Hi warmwaters,

I like your name too.

Glad you have a good DR.  And good you had a quick DX.

Welcome and I hope you make yourself at home here. This is a great group of sjoggies, sharing our journeys together.

blessings kimbo