Think I was sort of diagnosed today - or was I? Very confused...

[lelole]

Hi,

Had my 2nd Rheumy appt today.  I have been seeing him for suspected Sjogren's after having severe dry eye (since been schirmer'ed at 0), sort of dry mouth, dry skin, fatigue and joint pain.  The joints are mainly my hands (all of the joints even those right at the bottom of the fingers next to the palm), feet, elbows and knees.  Though I have also had pain in my shoulder, hip, and the back of my pelvis.

My blood tests have come back negative for SSA/SSB.  The Rheumy doesn't want to do a lip biopsy, as he says that they are unreliable and can come back inconclusive.  He basically launched in at the beginning of the appt, telling me how to cope with SJS dryness symptoms, so I then asked, do I have it then?  He then went into a complicated explanation which started with "it's all a question of diagnostic criteria" but eventually explained as I do not have the antibodies I have secondary Sjogren's.

I am not sure secondary to what?  I do have Hashimoto's thyroid thougand he seemed to mean that, but I didn't think that was possible?  He said it was good to not have the primary type as primary antibody one is associated with complications, and secondary tended not to progress, so I then asked why in that case I had joint pain?  He asked me a few more questions, and said I have polyarthritis.  He basically said also that I am not healthy, but he doesn't exactly know which "box" to categorise me under... and that polyarthritis is arthritis in lots of joints, but he doesn't know what is causing it - yet.  He said that time would be the best diagnostic tool, so he does want to follow me up in 3/4 months and he has said he wants to periodically check my viscosity.

He has also agreed to try me with Plaquenil, which he will write to my GP to start me on.  I am not quite sure what it will do, though he says it will help the fatigue, and will take 3/4 months to work...

So I sort of feel like I have an answer, but I am still very confused!  He is a very nice man, and seems to take it all seriously, I have no complaints that way, but I think his brain works quicker than mine, and so I haven't understood it as well as he thinks I have !!!

Hope you all feeling relatively well...

Leah xx

[Redetha]

Whoa !!!!  Check with the moderators here who have a lot of answers and research on the net yourself to see about tests, etc.  My blood work is not what determined my SJS.  It was the lip biopsy from my ENT.  He is the doctor I trust the most.  Try and have a list of questions ready when you go to see the doctors.  Insist that they are answered and if you don't understand, ask to have it explained.    Some sort of joint pain always seems to go with SJS.  If you read the posts in here you will see that most have it.  Good luck and keep coming here. 

[Chickpea]

Hi Leah

This probably feels like 'half a diagnosis' rather than the real thing because it's left you with lots of questions.  But I think you're right about this rheumy - he's a 'keeper' as they say here.  From what he said to you he's not ruling anything out, and he's not jumping to conclusions.  But nor is he dismissing your symptoms.  There are lots of 'grey areas' with diagnosis of SjS and other AIs, and he's just being honest about that.

Where has he left you?  He's happy to treat you for SjS without the lip biopsy - I'd take that as good news.  Starting with Plaquenil shows that he's serious about treating SjS itself rather than just individual symptoms.  He also knows his stuff about how long it may take to work.  You should see changes in dryness symptoms as well as help with fatigue.  There are loads of posts here about how to take Plaquenil so you avoid side effects: it's all about timing, dosage and what to eat when you take the tablets. 

Polyarthritis is a description of symptoms rather than a diagnosis.  It's good that he's going to keep investigating it and is going to see you quite soon.  Keeping detailed notes about your joint pain will help:  when it's at its worst, whether hormonal changes make a difference, weather, exercise etc.

Hope you have a restful evening.

Thinking of you - Chickpea

[Scottietottie]

Hi Leah 

Sounds like a diagnoses to me. I got a dx without positive bloodwork or a lip biopsy. Well - my blood was mildly positive for lupus, I have hashimoto's but the symptoms were all Sjogren's. If I can get the Plaquenil without having a lip biopsy - that's fine with me.

Plaq does take a while to work but its certainly made a difference to me.

Your rheumy sounds OK.   I hope Plaquenil helps you. Build up to your dose slowly and note that its not meant to be taken within a couple of hours of antacids.

Take care - Scottie 

[Sparkle]

Leah,

I was diagnosed without positive antibodies and I never had a lip biopsy. My rheumy told me that if it looks like a pig and smells like a pig, it's a pig.


Sparkle

[Chickpea]

Sparkle - are you sure it was a rheumy, not a vet?

Chickpea xxx

[Sparkle]

Chickpea!

LOL! That is a great question! I will double check his credentials!!

[missyb]

Sparkle,
*Sometimes* and I am not saying this is or isn't what he is thinking,  I think while they are not trying to be vague on purpose to us, if they kind fudge their way around saying you have something specific to your face, they can treat you, but also not have to make a diagnosis, which will be on your record and in the future could be a problem for you health insurance wise, if they can't get that specfic criteria the ins would require, but they highly suspect you most likely do have a certain disorder, know what I mean?

[missyb]

ps, but I meant to say that yes, I would assume you did get diagnosed..

[missyb]

Geez, on a second look, I am skirting even better than he! LOL

[TOB]

Hi There,

I am a newbie awaiting diagnosis. What I would like to ask is I have a positive ANA Speckled 1:640 and positive SSA (Ro60) and from what I gather here many of you have negative ANA tests and negative SSA and are still diagnosed with SJS. In my report from my Rheumatologist he states "if she were to develop primary Sjorgrens.....", I am confused as are my positive results not a sign that I have Sjogrens when so many have negative results and are still dianosed?  Also, is primary worse than secondary?

It appears that the rheumatologist is reluctant to commit to a diagnosis as he has mentioned 'possible' sjorgrens and oir lupus. He asked me if I had dry eyes and mouth and at the time I said no. However, when I thought about it after I have had several boughts of gritty eyes and although they do not feel too dry they are often red, sore and itchy. My mouth is a little dry but nothing compared to some of the thing I read on this site.

Maybe I should request the eye test (forgot what it is called!) and the lip biopsy when I see him next on the 26th May? I am determined to get a firm diagnosis as I am a little scared that there is a increase risk of Lymphoma with Sjogrens. My mum passed from Breast Cancer at 49 years old and I have several 'cists' in my breasts (they are apparetnly ok) and often get tenderness in my armpits. If I am diagnosed with Sjogrens then I want to ensure that I am regulary checked.

thanks

[dbab]

I have a "diagnosis" of UCTD which really isn't a definite anything.  My doc also is leaning toward Lupus/Sjogren's with me, actually overlap.  I have a positive ANA, positive SSA, and constant inflammation markers (ESR & CRP), low WBC.  I have arthritis (with minimal joint destruction), rashes (butterfly, SCLE, and discoid), dry eye/dry mouth, GI problems, CNS symptoms, neuropathy, and many more things. 

My doc said that since I haven't had any major organ involvement there is no need to label me with anything at this time.  She is treating me though... I'm on Lodine, Plaquenil, Prednisone, and Methotrexate for which I am very grateful. 

At first I wanted a definite diagnosis because its like you just want to move past that stage, I understand completely.  Now I don't think that way anymore.  Even though I know I have something, part of the denial in me thinks that I still have a chance to be healthy if I don't have a definite diagnosis.  Silly I know, but that's just me.  LOL  I know I will hit the grieving part of a diagnosis hard even after all these years.  I know I'm in the minority though.

[lelole]

Hi all, thanks so much for all of your replies - it has helped clarify things - and to get things into perspective!!

I guess as you say the main things are that I am being taken seriously, my symptoms are being treated, and I am being monitored.  It was actually refreshing for a doctor to say we can't explain it cause we don't know, rather than we can't explain so it must be you!  These things are all far more important than a "diagnosis"... The main reason I wanted a diagnosis was so I could explain to people (esp my boss!) WHY I can be sooo tired out when I look OK...

I actually don't get my plaquenil for a couple of weeks, as he is writing to the GP to ask them to prescribe it, so I have plenty of time to find out lots about it beforehand!!

Leah xx

[Pisces24]

I had 2 years of going to different doctors telling me that they were sure it was some type of cancer but couldn't figure out what and I didn't have they symptoms they thought I should have. Basically I'd see a dr for 6 months, tests, etc then be told I didn't have to come back. I'd thnk I was "cured" but my gp would tell me things were still not right and send me to another dr.    Finally in 2005 I was diagnosed with indolent lymphoma and started seeing an internal medicine specialist. She finally thought about doing a test for SJS and then I got sent to the rheum. dr. Now my diagnosis is positive for Sjogrens A&B which I figure I have had since about 1997!

The good thing is my gp (bless his heart) kept sendng me to specialists until one of them finally gave me a diagnosis unstead of just testing and shrugging me off. I've been steadily monitored since 2005 so they are watching me.  My thing was I felt fine except for "odd blood work", lotsa tooth cavities, numerous sinus infections (per dr) and the specialists driving me crazy and scaring me with their "we think" diagnosises.

Odd how doctors don't want to say "I don't know" or will shrug you off. Well, I did learn to be proactive w/the drs and I am not as needle shy as I used to be. 

[Patze]

Hi Leah,

Oh boy, are you sure we don't have the same rheumy?   He still does that even though he calls it SICCA, I guess it's better than one appointment I had it, and the next not.  It went back and forth for a while before he finally settled on SICCA - drove me nuts!

I'm glad to hear that he's treating your symptoms and not the blood work, that's half the battle these days.

Take care -

Patze