New and Very Nervous

[becky]

Hi, I'm new here.  My Primary Care Doctor found that my ANA was 1:1280 which got me referred to the Rhumy, Dr. Sizemore in Knoxville, TN.  At my initial visit last week, Dr. Sizemore said he is 90% sure that I have Sjogren's and he's just not sure if it is primary or secondary to Lupus. So I'm waiting on test results. 

I did have a positive ANA of 1:640 in 1998 but the Rhumatologist I went to said I did not have Lupus, even though she stated she did not run all the test.  My gastroenterologist referred me to her after finding the positive ANA.  I was never told that the suspected problem was Sjogrens, again, even though the required tests were not made.  I found out about this when I requested my medical records after moving to TN.  So I don't know how long I've had whatever it is I have.

After reading about both Sjogrens and Lupus I am 100% positive that I do not want either.  I'm sure you all don't either.  So I'm trying to learn everything I can and this site has been helpful already.  I'm still depressed about what the future may bring.

Becky

[Joe S.]

Welcome to the forum. Don't panic. it will be okay. There is a lot of good information here.

[Carolina]

Dear Becky,

It helps if you put your diagnoses and your medications with your signature line (or whatever it is).

It sounds like you already have Lupus?

If so, Sjogren's is a co-condition, but it will only add some 'things', on the whole Lupus is more of a big deal.

Well, that is MY humble opinion.

Hugs

Elaine

[Pisces24]

Well the big thing is How Do you Feel?
In my 6 yr journey to find a diagnosis, I had a dr tell me he was sure I had some type of lymphoma but durn I wan't sick enough. But if I got "xyz" symptoms to run to the emergency room. For three months I was waiting for the ceiling to cave in.     But after awhile I said - nuts to this.  I'm going to go on how I am feeling and take things one day, one test, one whatever at a time.

Nobody "wants" any of this stuff but in time you accept the diagnoisis and get on with your life. We all go thru stage when we get diagnosed with something like this but you will get rhough it, just like we did.
BTW:  My ANA is so high (yeah much higher than yours) , that they gave up counting.

[becky]

Thanks for the information and encouragement.  If I could stop feeling so tired all the time I think I would make it fine.  The "not knowing" is what drives me crazy.  IF you knew what the problem was, at least you could prepare for the fight. 

But, this I know, at least for me, it could be worse.

[Bels]

Welcome Becky!!

I'm pretty new to the site also but have found it very helpful. I'm not fully diagnosed yet so I'm still being poked and prodded. Lip biopsy on the 2nd (what fun!).
I guess I just wanted to say that my philosophy is that this is the life I have been given, I would not choose it, but it is mine. I must make the best of it! I know
this is a hard time, reach out when you need it and learn to laugh at the situation as much as you can. I have a probable dx of Sjogren's and Lupus plus
numerous spine issues. I'm 47. My best friend is 50 and she has MS. We have decided that when the time comes we will share a room at the nursing
home and ogle the male nurses! If I can't find things to laugh at I would cry way too much! Take care and give yourself sometime to grieve; then LIVE.

Bels 

[12lovehim]

Hi Becky.. I'm new here too.. This sight is amazing right.. I just wanted to share with you that all your feeling is normal.. and yet in regards to your health.. You have most likely been feeling like crud off and on for sometime.. When I first was told I had an autoimmune disorder they just didn't know which one yet.. I was able to go back 10 years and discover symptoms my Dr's kept missing.. I was first scared, then mad as all get out, now I'm just trying to figure out how to do laundry and clean the bathroom in the same day.. 

Being tired is what scared me the most.. I have been a very active person (red cross volunteer, red cross swim instructor and ret army and I also did missionary trips with our church) I felt like one day I woke up and someone stole my energy button.. now my energy comes and goes.. so I actually over do it on my energy days.. But when it comes to my grandbabies it's always worth the muscle pain the next day

So I just bless ya honey that you keep coming on here and getting encouraged.. I sure did.. If anything.. I don't feel crazy anymore when something like I feel like my body is "buzzing".. and you find 13 threads about feeling "buzzing in my body"... It feels so good to not be alone anymore..

Your new Sjogrens Pal.. Keri

[season]

Hi Becky nice to meet you. this disease can be a little scarey sometimes and acceptance was very hard for me. We have to treat our symptoms and take care of ourselves.

I wish you all the best. I love Tennessee and North Carolina.

[Meld256]

Hi Becky and Welcome to Sjogren's World! 

Sounds as if you have a good rhuemy who will work with you and help.  That is SO important.  That said, we all understand how a diagnosis or possible diagnosis can be nerve-wracking and make us anxious.  As you say, we want to know what we're fighting against so we know how to fight back.  Hopefully, you'll have those test results soon.

There are similar meds for Lupus and Sjogren's, since they are more alike than most think.  I know this is scary thinking what the future will bring, but it is a slowly-progressing condition.  You may get better or stay the same a long time. 

There's lots of info. here, friendly people and a caring atmosphere.  We are glad you found us.
Keep us updated and keep posting, ok?  We look forward to hearing more from you.

Take care,
Melinda

[lynnmarie219]

Hi Becky and welcome to Sjogrens World!

Waiting for test results can be so hard...if you are like me I want to know what it going on as soon as possible...like yesterday! 

Try to find some calm in the fact that what you are going through is very normal...we want to know what we have so we are validated and can deal with it head on...but at the same time it can be very frustrating and scarey. Give yourself the time you need and be kind to yourself...come here to read all you can so you can arm yourself with knowledge...and surround yourself with positive people and things that make you happy!

I hope you continue to find this board helpful...

[becky]

 Thanks again everyone.  I do feel some better after reading the posts in this site.  I've sure learned a lot.  I'm still waiting results but my Doctor said it would most likely be 10 days so that will be, hopefully, by the end of next week.  I am impatient so I'm trying to just do other things and put it out of my mind.  My most pressing problem right now is that I have to be on antidepressants because of a chemical imbalance.  Funny, I always thought to be depressed you had to have a reason.  Not so I found out, just have a chemical imbalance.  Anyway, I've tried Lexapro, Welbutrin, and now zoloft and they all cause side effects I simply can't live with.  The Lexapro worked well except for excessive sweating, the Welbutrin caused excessive dryness that made my eyes, nose, and throat worse, and now the zoloft is causing really excessive sweating and stomach problems.  How do you ever find an antidepressant you can take?

Becky

[Meld256]

I think we all feel impatient when waiting for test results!  So, a lot of us understand.

Antidepressants are like all other meds, unfortunately.  Seems like they all have some side effect for some of us.  Suppose we take what works best with the least amount of effects.  Hopefully, your doctor will be able to help find one that will strike a balance.
Take care, and remember you're not alone in this. 
Melinda