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Sjogrens Topics => Living With Sjogren's => Topic started by: tricia on February 20, 2010, 12:10:45 PM

Title: a bit scared - just disgnosed
Post by: tricia on February 20, 2010, 12:10:45 PM
hi everyone
First of all I must say that I was sooo happy to discover this site.  I am 30 years and last July my ESR started to be elevated, now it is 30 (0-20).  Then my ANA was positive but then negative at at higher titer.  Then in january this yr my SS-A was very positive.  I don't have any of the classic symptoms of sjogrens just very ocassional muscle pain mostly in my neck - which an xray showed was a stiff neck.  Since the diagnosis by my primary MD I started to experience a dry tongue.  The specialist said he is a bit hesistant to label the diagnosis but would like to see what develops.  I have another visit next month and he asked I repeat my ESR and if still elevated or increased he will order a lip bioposy.  Since then I have read what I think is all I can find on sjogrens and I must admit I am scared, I keep thinking that I will die ! or that my life is shortened in some way and every pain in my body I feel as if it may be getting worst.  I think since then I have been experiencing some depression and anxiety.  I was diagnosed with anxiety previously and this has not helped.  All my other tests have been fine ENA, CPR, CBC, CPK, RF, liver and kidney, Tyroid - it seems to be primary sjogrens.
Does anyone have any advice for me? what is the prognosis like ? I would greatly appreciate any info as I do not know anyone who has sjogrens.
Thanks much
Title: Re: a bit scared - just disgnosed
Post by: YYC_ Mommy on February 20, 2010, 02:44:48 PM
Welcome! I too like you did not know anyone with Sjogren's until I came here. I wish I had some great advice but I was diagnosed in September 2009 and I am still waiting to see my Rheumy to begin treatment.

I have gone through many emotions---scared, mad, frustrated, sad, worried, hopeful, etc. The disease is different for everyone. My worst symptoms are the joint/muscle pain, the electrical shocks/vibrations and fatigue. I can deal with the dry eyes and mouth most of the time.

You will find lots of great and amazing people here that are always ready to help you out with any questions.
Title: Re: a bit scared - just disgnosed
Post by: navydad on February 20, 2010, 02:56:28 PM
If you can advoid it,, dont get th lip biopsy,,see a Rheummy,, take him or her your lab work and he will prob say SS,, he can do other blod work to look for other wuto diseases,, worst thing I did was get a lip biopsy, it left part of my lip numb,, that andn teh sural nerve biopsy I had done which left the left side of my foot numb,, my advice,, see a good rheummy,, do a search for your area,, I know you doc DXed you,, but you need to be under a rheummys care,, they are the experts on this,, well at least they should be,, and they  treat byt symptoms,, of course your scared,, we all were and some of us still are,, we wonder where its going to go,, what its going to do to us,, its a miserable disease,,truely miserable
Title: Re: a bit scared - just disgnosed
Post by: eyeamdry on February 20, 2010, 02:57:27 PM
Hi Tricia--
You came to the right place.  There is soooooooo much info on here and to just browse through when you have time is good.  Remember, you will not get all of the things associated with SJS.  One of the oddities is that this disease IS ODD.  Some people just get dry eyes and dry mouth.  Othere get the pains in joints and some of the fatigue which is a big thing.

Please remember though, it sounds like you have a gooed GP and is willing to take you through testing.  Many docs will not even know what SJS is.  If you have Sjogrens, you'll want to go to a rheumatologist, but this is no life and death emergency.  Please remember that.  People do not die from Sjogrens, although they may feel like they are when they have a flair or are sick.  I got diagnosed with breast cancer 6 months after my SJS diagnosis.  Well, the cancer can kill me and the SJS not.  I am clear of the cancer 3 years down the road.  Just trying to show you the "worry-a-bility" of a couple of things and putting SJS on the low end.

Some of the things we have wax and wane and we are not sure if we had that ache or not.  A good sense of humor is a must--and being scared to death is a must not.  We're with you all the way.  Lucy
Title: Re: a bit scared - just disgnosed
Post by: Patze on February 20, 2010, 04:04:52 PM
Hi Tricia,

Let me also welcome you to the SJS World and family!  Please do look around the board as there are tons of topics to be read, and oodles of great members to meet!

Nope, SJS is not a killer.  The others are right, some folks really never develop symptoms (just the positive blood work), while others get really sick, and everything in between (not to mention that everyone seems to get it differently too).  

Yeah, that ESR drives me bonkers too!  It hasn't been lower than 34 (0-24 scale for my age) in several years now, and I don't know if it ever will either, hummmm, and the rheumy really hasn't been able to explain why either.  

I'm also glad to see that you have a strong primary doctor, you'll find that that's half the battle with AI's.  Now I don't know if you have a rheumy or not, if you don't can your primary recommend one perhaps?  When you see the rheumy, ask him if he will treat you with your current blood work instead of getting a lip biopsy (I am sero negative, but the rheumy treats my symptoms).  

I will say this about the lip biopsy, if you do decide to have it done, be very careful on whom performs it as not all doctors who do them, do them well (I learned that the hard way).  Also, see if you can find out how many samples the lab reads a month, as not all labs see enough samples to know what they are looking at.

Again, welcome, and don't be shy about asking questions as there is usually someone about.

Take care of yourself -

Patze
Title: Re: a bit scared - just disgnosed
Post by: beej on February 20, 2010, 08:51:54 PM
Best wishes to you Tricia!  I came "here" for the first time two weeks ago when I learned the diagnosis.  Believe me, for the last two weeks, this group has been my primary support and source of helpful information.  I hope you will check back in frequently as there are wonderful members here who see to it that every day newbies are welcomed.  This is very pleasant approach here and not always that common to have a forum so active.
Title: Re: a bit scared - just disgnosed
Post by: Mountain on February 21, 2010, 08:37:38 AM
Hi Tricia, and welcome from me too.  I was diagnosed with SLE and Sjogren's late 2009.  Since then I've been prescribed treatment (currently Plaquenil and Prednisilone).  Before treatment I had terrible skin problems, joint pains, fatigue, dry eyes.  Since treatment I feel so much better.

It sounds like so far you haven't developed too many of the Sjogren's symptoms, and with a good doctor looking after you, and an early diagnosis, hopefully they can get you on any appropriate treatment to help you feel tip top.  Like the others say, it's not a death sentence, although you can feel a bit rubbish from time to time.  Now that you're 'in the system' you will be looked after.

The guys on this board are very friendly and willing to offer support and advice, so you've come to the right place. Knowing about the disease has helped me, but I have to remind myself that I am unlikely to get all of the symptoms, and to stay positive!

Good luck, and take care.

Lynne
Title: Re: a bit scared - just disgnosed
Post by: Pisces24 on February 21, 2010, 08:38:09 AM
Are you on an axiiety med?  I am and it has really helped me.  I also had a couple visits to a counselour / physchologist that helped me look at things differently. Sometimes we can't change our situations but we can change our reactions to it. My gp tells me my anxiety is situational - well DUH?

My SJS is not 'bad" either or just I am so used to it by now. My gp sent me on my "dr journey" to get to the bottom of my odd bloodwork - he didn't want to just let it go and boy was he determined. I FELT just fine! Long story short - after 6 yrs of a heck of a lot of test and a biopsy, I finally got diagnosed with SJS by an immunologist through blood tests at a teaching hospital. I have very high A&B. My symptoms are: a terrible time with teeth cavities, dry lower lip, easily gotten sinus/throat infections (sinus flushing has helped), allergy eyes, odd bloodwork and some fatigue. .

When we are diagnosed with a disease - we almost go through the stages of grief - and it takes awhile to get to the acceptance phase. Sounds like you are still dealing with that. Nobody know what the future holds it is just us with "stuff" like this it brings the reality of it more to the forefront. (I had a diagnosis of lymphoma hanging over my head for 2 yrs.)  It might be hard to think more rationally now so I really think talking to a professional (most jobs insurance covers a few visits a year) would help and an anxiety med. I would be leerly of having a lip biopsy too. Have you had a Schirmer's test on your eyes - very simple test?

Good Luck and let us know how things turn out.
Title: Re: a bit scared - just disgnosed
Post by: DragonflyC on February 21, 2010, 09:04:03 AM
Welcome! 

You'll find the people here provide great advice and can help put your mind at ease in many ways.  I think I can help you understand more about your blood work. 

First, ANA is always eventually negative at a higher titer; that's how the test works.  You'll be positive up until a point.  That point can change, however.  I was positive at 1:40 at first (that means that the ANA showed up until the sample was diluted a certain number of times; at that point it wasn't positive anymore), then 1:160 (it took more dilutions to be negative), and eventually 1:640 (even more dilutions).  My doctor doesn't test it anymore, because it kind of doesn't matter once it reaches a certain point, usually beyond 1:160, which is still a fairly low positive; after that, it's high and convincing evidence of autoimmune activity in the body. 

I'm a little concerned about your doctor considering a lip biopsy.  Positive SS-A and symptoms are enough for a Sjogren's diagnosis.  I can't see why you'd need further testing.  SS-A isn't as conclusive as SS-B, but with symptoms it can be enough.  I only have positive ANA, SS-A, and symptoms (arthritis, aches, dry eyes, mild dry mouth). The treatment for SJS and other illnesses indicated by these tests is about the same, so it also doesn't really matter if the SJS diagnosis is 100% conclusive.

As others have said, Sjogren's won't kill you and is unlikely to shorten your life.  It's a frustrating illness and makes us very uncomfortable, and you should take it seriously because it is a disease and your body is being impacted.  For many people, though, it's more annoying than anything else, which can be why a lot of people are unsympathetic to those of us suffering with this illness ("Well, you're not dying. . .").

Like you, I also started with muscle pain.  Eventually, I had dry eye.  My dry mouth started much later.  There really is no "classic progression of the illness," no matter what doctors say.  The dry mouth and eyes are the most common symptoms, but everyone experiences SJS differently.

Are you on any medications yet?  With your muscle pain, plaquenil might really help a lot.  Have you spoken with your doctor about it?  It's an antimalarial that seems to help with fatigue and aches and pains of Sjogren's, lupus, and several other AI conditions.  There are some scary side effects listed, but they are extremely rare.  Most of us (not all, but most) take it without major problems.

If your dry mouth gets worse, evoxac or salagen are available.  A lot of doctors just say "sip water," but medication can save your teeth and help avoid blocked parotid glands. 

Best wishes for figuring out this crazy disease.  The more you learn, the better you'll be able to advocate for yourself.  It can be overwhelming and difficult, but everyone here is great about helping. Looking around at old posts on this forum saved me from my own worst fears and the misconceptions on the internet in general.
Title: Re: a bit scared - just disgnosed
Post by: beverley on February 21, 2010, 11:00:59 AM
Welcome Tricia,

I have a lot of sympathy for your state of fear.  It took me a year to eighteen months to get to a point where I felt at peace with myself.  It all seems horrifying at first and you think 'normal' life has ended, but slowly you will find that you learn to live with it and that it needn't stop you doing everything you enjoy.  Yes there are some changes and even sacrifices you have to make, but on the whole it is not the 'death sentence' it seems at first.  This is one of the worst times, you will get to a point that is much calmer.  Good luck.

Beverley
Title: Re: a bit scared - just disgnosed
Post by: inga on February 21, 2010, 11:59:14 AM
Some people get the disease with all the systemic issues, and they may have a more difficult time.  I have seen some people, including myself, with SjS that is every bit as bad a Lupus or Scleroderma.   It all depends.  I have a nasty profile with highly +ANA and low C4 and peripheral neuropathy.  Unlike you, I don't have the + SSA or SSB.  We are all VERY DIFFERENT.

Some are very disabled and others can work, carry on life, go thru pregnancies, and carry very heavy work loads.  I did for most of my life. I won't even tell you how many kids I raised while working as a nurse. 

  At 57, it has me down now, but I did endurance sports competitively until age 50 (and I wasn't half bad-I have my own wall of fame in my home---legend in my own mind).  Now the disease is in my esophagus, lungs, heart, joints and nervous system and I am treated with IVIG.  Vacuuming is an endurance sport for me now.

You can't compare yourself with any one else.  Since you don't feel badly right now, that is a good thing.  Positive blood work, does not always mean disease. It is good to know you many have these antibodies, but normal healthy people can have antibodies and not get disease at all, let alone, serious disease.

 I have daughters your age, and I would tell them, live large....don't focus on the disease.  You will do well. 

Medical advancements in the future will eventually knock this disease on its behind.
Title: Re: a bit scared - just disgnosed
Post by: Blue Kat on February 21, 2010, 01:05:56 PM
Hello Tricia...you've found an excellent place to ask questions and learn information.  It's been my experience that the people here are very supportive of each other.  As for myself, I didn't have any fear about my diagnosis...I was actually happy to know that I wasn't crazy and it wasn't all in my head!  Take care and let us know how you're doing, dear! 
Title: Re: a bit scared - just disgnosed
Post by: tricia on February 21, 2010, 02:36:47 PM
Thanks soooo extremely much for all the responses - once again I am so happy I found this site and you guys.  Reading all your responses makes me feel very encouraged and that I am truly not alone.  Felt like that and cried my eyes out that I was going to die. I have been to see a therapist and it has been a good experience as I been able to vent but it is much better also speaking to others who have first hand experience.

The specialist I spoke about was a rheumatologist.  Actually since January I have seen 2. The first I was not very satisfied as when I asked questions I would only get a bare answer and I left the office more depressed and confused.  This second one was much more vocal and explained a bunch of things to my but again I think speaking to other who is living with it is good. I have another visit in March, he requested a CBC and ESR.

From reading the other posts I realize that I may have been experiencing symptoms a while back but very mild and far apart.  I do have brain fog and at times my feet would feel tingling and back aches but thought the aches were from sitting too much from my job. But today I felt some tiredness and it was not good! 

Thanks for reasuring me that I will not die from this.  This is one of my major concerns when reading about organ involvement. It seems that this disorder is more of a burden.

Once again thank you all and I am reading all the posts I can and it is helping. One question, what is the longest has anyone ever had sjogrens?
Title: Re: a bit scared - just disgnosed
Post by: Scottietottie on February 21, 2010, 05:10:47 PM
Hi Tricia  :)

I'm a bit late but I just wanted to say welcome to Sjogren's world!

Take care - Scottie  :)
Title: Re: a bit scared - just disgnosed
Post by: malew/sjogrens on February 22, 2010, 10:52:02 PM
Tricia,

I too was anxious when I got diagnosed in October 2009. But if you find a good Rheumy and manage your disease you should be fine. It affects each person differently.

When I first went onto this forum, I was concerned by reading some of the posts as some people who post really have it bad.

I sometimes take a break from reading the posts as it gets me down. We need more positive posts from people than the negative venting ones. Let's hear some good success stories please. We all need to be uplifted you guys!!!!!
Title: Re: a bit scared - just disgnosed
Post by: DragonflyC on February 23, 2010, 07:53:54 AM
Unfortunately, I think you'll always see more venting than celebrating here.  I know that when I'm feeling OK, I don't hang out here as much.  I don't need the support in those times, and to be honest, I don't want to think about my illnesses.  When I feel cruddy, that's when I need this board. 

I do like the silver lining thread that's going right now (it's called something like "The Best Thing About Sjogren's"), but I'm usually looking for other people with the same weird problems that I'm having when I come here.  Is it bad that I feel better when I at least know that I'm not alone?  I don't want others to suffer, of course, but it's nice to know what I'm dealing with and other people's experiences have proven so helpful in that department. 

Barbara Ehrenreich recently published a book called "Bright Sided" about, in large part, the pressure on sick people to be positive.  I think that we need to be careful not to push ourselves to be happy about something so miserable, even though I think we all try to be as positive as possible. 
Title: Re: a bit scared - just disgnosed
Post by: beverley on February 24, 2010, 11:42:43 AM
Like DragonflyC, I tend to come on here much more when I'm feeling grotty.  Partly because if I am off sick I actually have the time to visit the boards.  I do dip in when I'm well because sometimes other people need good vibes because they're down and they are there for me, so it seems only fair to return the favour.

On the bright side, life can and does go on and you do adjust.  I'd rather not have SJS, but it really isn't the end of the world.  When I feel sorry for myself I often think - well there are people living with far worse things like my friend who has cancer and is currently undergoing chaemo (is that how you spell it?).  Her life is in the balance, for me it's just my livelihood - no contest really!

Beverley
Title: Re: a bit scared - just disgnosed
Post by: tricia on February 24, 2010, 05:39:52 PM
I agree when your down it is good to hear words of encouragement and it does give hope, at least for me I am only just (well just a little) starting to put this into perspective and learning to cope with it.  I have another counselling session tomorrow and these also has been helping.  I think a major factor in helping me cope is coming to this site and hearing from ppl with sjogrens that the diagnosis is not a death sentence, which I originally thought.