Diagnosed on symptoms

[Jenny1960]

Hi,
I have been diagnosed with sjogrens this week on symptoms alone; I've previously had the general blood tests and the rheumatologist has ordered an ANA test and repeat of vit d test but that's it. Is that normal?
Jenny.

[Carolina]

Hi again Jenny (I think I've welcomed you before).

I was diagnosed on symptoms by a very well trained and brilliant Rheumatologist.

10 years later, and never a bit of positive blood work for Sjogren's or any other autoimmune condition, I was found to have a Primary Immune Deficiency Disorder.  This makes it very unlikely that I will test positive for an autoimmune condition, tho' there are those on our forum who both test positive for Sjogren's AND have a Primary Immune Deficiency Disorder.

Anything and everything is possible with the mysterious confounding Immune Mediated Conditions.

Ask questions, share concerns, we are here for you Jenny.

Hugs,  Elaine

[Jenny1960]

Thank you Elaine; I have to say I was impressed by the speed that the rheumatologist came to his conclusions when he read my vast list of symptoms - the only thing is, my mouth and eyes are not especially dry (I'm hoping I haven't got that to come!) what I do have is a really bad taste in my mouth most of the time - it disappears overnight and then gradually gets worse through the day. I suppose that could be to do with being a bit dryer than normal - I'm not really sure what normal is anymore!
I have so many questions rolling around in my head but I kind of can't channel them at the moment if that makes sense; I feel as though I'm grieving at the moment - for the Jenny that I used to be; I hope that doesn't sound pathetic. I've felt so isolated since I got ill and I thought a diagnosis would help that but now I feel worse - I think it's because everyone around me has got some kind of conclusion or closure from my diagnosis and are pleased to at last know why I've been so ill; I do feel like that but I also have this grief and fear of what the future holds and I don't seem to be able to convey what that feels like. I know I will deal with it and it is very early days as I was only diagnosed 4 days ago; I do have a very positive outlook generally but not there yet with this.
I hope to be able to give to this forum in time as well as take from it but I feel like a bit of an info leech at the moment!
Jenny. 

[cremer]

I have never had dry eyes, and only now after 3 years I have just developed a few signs of dry mouth.

I was diagnosed from blood tests alone. Turned out I was positive for both SSA and SSB and had a ANA of 1:2560

[SjoGirl]

Jenny, I had a positive SSA, but that was it. I was eventually diagnosed based on it and symptoms. It was not until later that my ANA became positive (speckled so some have wondered if I have lupus or undifferentiated connective tissue disease--Hopkins said it was the later and not SJS).

My dryness comes and goes, but has progressed a great deal since last fall as have my muscle and joint aches. I've learned that when I become ill it kicks off a new disease progression and I had an infection followed by a terrible virus in the fall.

With regard to mourning, allow yourself to do so, not just for who you were, but for the shift in your life. Chronic illness is, chronic, which is different ball of wax than something that can be treated and cured.

If you are not familiar with Elizabeth Kubler Ross' work on death and dying (which applies to different forms of death) I recommend it. Eventually you will hopefully come to find a new way of being and living that, while different, will still be rewarding. I have also found comfort in reading the Desiderata.

Most of us have been down this path so seek advice and guidance and have a pity party with us when you need it. This is a safe place to do those things.

[quietdynamics]

Hello Jenny1960 and Welcome,

I did not see you mention that your Rheum had Rx'd Plaquinel?

Not everyone had noticeable dry eyes and/ or mouth with SJS.
And when you search SJS you do not have to have the vast array of symptoms, and there are overlap AI diseases as well, that may show up or not.. no crystal ball.
There are SJS patients who do experience remission ( being symptom free), others require more management.

It is human to experience a grieving period when we have a loss.
Losing a part of who we were, what our dreams were.. great and small. The loss of control, confusion, bewilderment, feeling good,, then the disappointment of a few days later not feeling so great.

Even wondering if 'we' did something wrong, self doubt.  Waste of energy.

This process can 'take you down', or yes, make you grow.
There are many posts and reputable advice from SJS Drs. about lifestyle suggestions to help.
Drinking plenty of water, water, water
A bit of exercise,, 10-15 min walk.
Healthy foods.
Good sleep habits, eye and dental check-up.

Common sense to start as best as you can.

*There are some physical activities I cannot do now.. but, that does not stop me from cheering along others and celebrating joy in my own heart too.

You have a lot to mentally digest right now.  Questions will come and go. And the words will be there.

[Jenny1960]

Thank you all for your kind words and for recognising what I feel; in a world where it feels as if I speak a different language to everyone around me it is so comforting to know that someone out there understands.
So far the only things I have been given are Vitamin D - (although he said the dose will likely go up very high after he gets the blood test results), levothyroxine and artificial tears. I did buy a spray that is supposed to replace saliva as I thought it may help with the nasty taste (varies between metallic, acid, amonia and bleach type taste); so far the spray hasn't helped.
I recognise so much of what you say in your responses, especially about feeling good and then the disappointment when it all comes back again.
Well I must get some sleep, it's just gone midnight in my part if the world and I have to be up for work in the morning; do many people with this condition manage to continue at work full time? I hope to carry on as it helps me escape constantly thinking of my health.
Jenny.

[cccourt1942]

Hi dear,
    If you had asked me this and I had never been on this board I would say no.    Since being on this board I have such mixed feelings about this syndrome. 
    1st) People on this board, positive or negative, old or young, scared silly or resigned, are here for answers.  More often than not they are seeking answers or directions for some type of discomfort.  We are all on THIS forum because the term SjS was used somewhere along the way.
     2nd) After reading SO much, I am convinced most (if not all) of the posters hereknow their bodies, symptoms, and health needs better than their doctors do. 
     3rd) TOO MANY people report they "know" or "are certain" they have had this syndrome 20 , 30 , 40 years...or since they were children or since triggered by an illness or surgery, etc, etc.  I happen to be one of those persons.  At age 71 I have but three people left in my life who vividly remember I have had ice cold hands and feet (year round) ALL MY LIFE.  However, the area below my nail beds are not bluish purple--or even red---therefore I am not considered positive for Raynaud's.  Go figure.  A neurologist diagnosed that probably 20 years ago.  Anyway, nothing you can do about that symptom anyway but hope you have room for dozens of pairs of gloves!  At 45 an optometrist asked if my eyes hurt.  I said no.  He said it looked like I had shards of glass in my eyes.  I have drank copious amounts of water...and in large quantities... as long as I can recall.  People have commented about it all my life.  I thought I was just thirsty.  Did I have dry mouth?  I have heard person after person talk about a bad taste in their mouths.  I worried about bad breath until I was about  40.  I had so much sinus drainage.  After that the sinus infections were so frequent I was on medication year round.  The taste was different but still not good.  I just figured that's how I was.  NEVER QUESTIONED IT.

So here is the question:  could I have tested positive for SjS in my--uh---20s, 40s, 60s?  We won't ever know.  But when I walked into a rheumatologist's office the  first of December (2013) with a medical history + presenting symptoms (and times of onset) he was polite, made great eye contact with me, allowed me to tell him how I had arrived at his office...and then said:  I will order blood tests for you.   It will be good to have them.  But I think you have Sicca Complex.  I said "spell that."  He explained it was just a grouping of the symptoms but not the autoimmune disorder.  When he called to tell me he was wrong regarding my diagnosis.   He stated most people tested positive in two antibodies...I was positive in three.  He told me he was VERY surprised.   When I went back for a second visit (to discuss my Rx trial) he continued  telling me he had never been so surprised.  In his defense, he doesn't look very old.     Early 40s at most!

At the end of the rheumatologist visit, he told me: Well..."we" will manage the symptoms...and I'll see you back in a year."  My dx ended by sending me back to an Otolaryngologist who treated my sialedenitis for 6 years, (never mentioned SjS), an Opthalmologist who has treated me for 8 1/2 years...and in the last 4 years I have had "double" "allergic" conjunctivitis 3 times (and has never mentioned SjS) , my dermatologist who has treated me for my guttate psoriasis for 8 years (and never mentioned it didn't really act like "real" psoriasis) and my dentist who NEVER suggested my teeth were turning browner and browner by the year due to lack of saliva at nighttime.   So I have found a new dentist and am looking for new "ologists." 

So do you need a positive  diagnosis from tests?  If you do, do you think it is for insurance reasons?    I don't know.   Check Sicca Complex on the internet.  You are treated the EXACT same way as for SjS.  You can even have peripheral neuropathy with Sicca Complex.   If a doctor can diagnose you with Sicca Complex on symptoms alone, what difference does it make if one has SjS or not?  I am asking....really?   Could you be diagnosed earlier?  I don't know.  I am thinking since it IS a progressive disease  some might need to "PROGRESS" toward those positive results.   Does that make sense to anyone else?

[grammad97]

Hello Jenny1960-
It was a relief for me to have a name given to all of my symptoms. It took me almost 10 years to get my SJogrens diagnosis. Prior to it I was told lupus without organ involvement or chronic fatigue or possible MS or fibromyalgia .......
I had a positive ANA every lab done by a new doctor and my D was low also.
Finally the doctor of the month said UCTD and primary sjogrens.
The name gives us validation our symptoms are taken seriously.
As others have said our symptoms are treated the same with or without the labs.
Its okay to grieve but don't dwell on the diagnosis and assume the worst is going to happen.
In my case I cried and had a pity party and then realized I am in control of my attitude and actions. I chose to focus on all I can do.
Breathe and give yourself time to process. We all have been where you are.