So what do I do now??

[lelole]

Hi,
I have posted a couple of times before, as I was being investigated for Sjogren's.  Sjogren's came up because I have had repeated abrasions on my cornea caused by dry eyes (it even happens with lacrilube sometimes)... I have been complaining of thirst for a while(poss dry mouth? though I do have saliva, often it feels like I am only getting saliva form undermy tongue and I have to physically move it around) and am still having quite bad aches in my knees and elbows, and strong pains in my finger and toe joints, and very fatiguey tired days,  despite being on 3grains of armour thyroid and good T3 and T4 levels.

I have had swollen, sore lumps under my chin (near to the bone and quite far back) for quite a few years, on and off... which I just thought everybody got...

Somebody on the thyroid forum I visit mentioned sjogren's as she has it, and that's what alerted me to the other symptoms, and I began to believe I have it, as so much made sense (even the fact I rarely sweat at all)...

I saw a GP, who sent me to have ANA RF and some other tests (not sure what), and said she would refer me to the rheumatologist.  However I rang the surgery to get see if the results were back, and the receptionist said they were normal, no action required.  So I have asked the GP to ring me to discuss this.

It looks to me like they are now not referring me based on the tests?  I feel really fed up, not because I wanted to have Sjogren's, but becuase I could not understand why I was still pretty under the weather with the thyroid treatment, and this made total sense - sometimes having a name of something to tell people why you feel rubbish can help!

So really apart from being a bit of a moan (which it is, I know, and I'm sorry!), I am writing this to ask if it is possible or likely to have Sjogren's without a positive blood test, and also, from what I have mentioned above does it sound like I have? 

I really want to find out what on earth is up with me - if only for my daughter who is 2 - as I feel I am not being a good mum to her always being ill, but at the same time, if it isn't sjogren's then there is no point flogging a dead horse...

Sorry to drip on...thanks in advnce for any input!

Leah x

[watoozie]

You need to see a Rheumatologist.  I have Lupus and Sjogrens, for about 4 years now.  I have been on Plaquenil since diagnosis and it has helped tremendously.  It takes about 4 months to feel the benefits, but they were great for me.  I have abrasions on my cornea and even had a torn cornea, they put a contact on until it healed.  I use Bausch & Lomb Soothe XP eye drops upon waking in the mornings, before opening my eyes.  I also have the permanent punctal plugs in lower tear ducts.  I have had some flare ups, but I feel so much better than I did.  Hope you find someone who will listen to you and that you find some relief.  Take care.

[Scottietottie]

Hi Leah 

" No action" is just not good enough, whether you have SjS or not. You have symptoms and you need to know what's causing them and they need to be treated. I'd definitely ask to speak to your GP about this. On the strength of the "No further action" you could also tell them that you felt compelled to do some research of your own on your symptoms and that you've learnt that it's possible to have SjS without having positive bloodwork. On the basis of that you would still like referral to a specialist.

I got dxd on symptoms - not bloodwork. Certainly I already had autoimmune thyroid disease but my endo referred me to a rheumy and I got the dx and I don't even have the swollen glands issue.

Take care - Scottie 

[lelole]

Hi Watoozie, Scottie,

Thanks for your kind words, it does sound like maybe there is a possibility I have this - I will ask my doctor to refer me still.  My job provides me with private insurance, so at least it shouldn't be a problem, and won't waste any NHS resources...and you are both right, I do need to find out what is causing these symptoms, they are definitely there, and if my thyroid is fine, then it must be soemthing right? I guess I have had so many years on thyroxine with symptoms being told that I am fine cos the bloods say so, I have begun to doubt myself and my own symptoms...

Scottie - did you find that you have joint aches and pains or other symptoms which are down to the sjogren's which you originally thought were the hashi's?  How do you differentiate between them? Cos it seems like the fatigue and joint pain is a bit of a crossover symptom?

Watoozie - did you have negative results too? 

Thanks...

Leah xx

[Scottietottie]

Hi Leah 

I actually found recently that all the aches and joint pains I was putting down to Sjogren's were, actually at least partially, thyroid related!  My thyroid decided to go off on another rampage again and they've been trying to stabilise it since November. An increase in thyroxine has had a diminishing effect on some of the aches and pains.

I've never worked out what causes what symptoms. I've had symptoms for years and was always dubbed 'hypochondriac' and then menopause happened and everything came to a head. Within 2 years I was dxd with Hashi's, SjS/Lupus, IBS, Irritable bladder also, plus a hiatal hernia and osteoarthritis thrown in on top of it. Aches and pains seem to be able to be caused by any of these things, along with fatigue, gastric upset etc.

I decided to go cold turkey as far as menopause went in the hopes that one lot of symptoms would just go!! (No HRT) Can't say that they have. Maybe I had an easy menopause and it was just everything else that was difficult!!

Take care - Scottie 

[watoozie]

I also had severe joint pain, hips, knees, hands, wrists, muscle aches, headaches, rashes, very weak and fatigued.  After the Plaquenil some of the symptoms subsided, but I had a bad flare last summer (sun really bothers me) and was on a round of Prednisone for 3 months.  I still have my days I don't feel so hot, but some of the symptoms you just learn to live with.  My blood work tested positive.  My doctors just didn't listen to me and I was near down and out before he sent me to see a Rheumatologist.  Because I am on Plaquenil I have to see my eye doc every 6 months, but only for precaution, he says there really isn't any risk, the old malarial meds used to cause eye problems, but the Plaquenil does not.

[lynnmarie219]

Hi Leah,


I can also understand the need for a diagnosis or at least some answers to what you are feeling...that is not asking too much. I agree that talking with your doc again to see if they can run additional tests or at least treat your symptoms because as the others have said...you do not have to have positive labs to be diagnosed...some people take years for their labs to become positive and some never do.


Good luck in getting a referral to a good rheumy....and let us know how you are doing! 

[Patze]

Hi Leah,

Sometimes you have to be the squeaky wheel to get what you need.  Please don't bash the nurse/assistants over the head with a club (no matter how good that would make you feel), but sometimes I have to get a bit insistant about things or I would still be struggling to figure out why I was feeling so miserable (as the GP didn't seem to really care).

Hang in there and good luck!

Patze

[lelole]

Hi guys, thanks for all of your replies...

Well it looks like I do have positive results after all.  Apparently the person I spoke to was talking nonsense as although my RF was negative my ANA was positive, although only just outside the normal level.  The doctor has made my referral, and luckily for me, I have an appointment booked at the local private hospital in 2 weeks time...

I feel strangely relieved, and yet at the same time very worried... I guess I need to just wait and see and hope my Rheumatologist is a good one!!

Leah x

[Chickpea]

Hi Leah

That's not a great start - a negative result and then 'whoops!' it's positive!  I hope this wasn't someone connected to the rheumy you're going to see in a fortnight.  You're bound to have mixed feelings about getting a positive diagnosis.  I remember up to that point hoping it wasn't SjS, but also not wanting to remain in 'limboland'.  Allow yourself time to adjust to the diagnosis and implications of SjS.

Have you checked out the rheumy you're seeing and whether s/he knows much about SjS?  I know you said you don't want to waste NHS resources, but you're entitled to everything that's on offer.  Not all rheumies work in the private sector so it's worth checking out the best person in your area and approaching them via NHS or private routes.  You can post here to ask for recommendations in your area of the country.

Let us know how you get on.  We'll be thinking of you - Chickpea

[lelole]

Hi chickpea,
Thanks, actually luckily for me the person who had got it wrong was only the gps receptionist, and so hopefully it won't reflect on my standard of care! I am in Plymouth and have gone private in the hope I will be seen and thing resolved sooner than Nhs...dr is called Hutton... Sounds like it may be a case of fingers crossed tho!
Leah x