Could it be sjogren??

[journey]

I will definitely ask my doctor if I can see a rheumatologist. I just hope he will agree to that. I've been to the doctor many times and until now, no results/diagnosis, so I'm a bit afraid he'll think it's 'between my ears' or that it's just stress or something... But I'll try. I'm reading as much old posts as I can, trying to learn more about sjogren. I'm so happy to have found this forum. I can't find that much information here in the Netherlands, so this forum is a blessing.
Thank you very much for your help!

[journey]

Well I've been to the doctor today and asked him to send me to a rheumy, but he said that most rheumy's usually prefer the doctor to do some bloodtests themselves first, because otherwise they get a lot of patients with vague symptoms which probably don't need a rheumy.... I don't know if that's true, but at least he's now giving me a bloodtest to check for rheuma, SSA, SSB, anti CCP (and ESR again).
So if those test are negative as well, I'm giving up my journey, because than I really don't know what to look for anymore. I'm having the test tomorrow and twelve days after I can call my doctor for the results.

...

[Rayven]

How does the health care system work there?  Do you need to have a referral from your regular doctor to see a specialist?

Don't give up hope no matter how the blood work comes out. Results can vary from person to person a -lot-.

If you can't get a referral to a rheumatologist, maybe you can get one for neurology? Hand and foot/leg pain plus brain fog should meet their criteria for being seen, maybe?

[journey]

Thank you for your support. Yes, I need a referral from my doctor to see a specialist and I'm pretty sure if the lab tests are negative he's not going to give any referrals anymore. I just have this feeling.

...I tried to do a test on my own a little bit...please don't laugh ... but I did a sort of "spitting test" to see how much saliva I have per minute

It was hard, I didn't get more than 0.2 ml/minute and foamy (white). I have to say I ate some liquorice a minute before. I had a very dry mouth afterwards and my glands felt a bit agitated/itchy.
Does anyone have anything to say about this?

[Rayven]

Hey, spit tests are a valid medical diagnostic tool. No laughing

Can you change your primary doctor by chance? Ordering that blood work is a good move but if you really don't have faith that he will see you through to a diagnosis and relief... 

[journey]

I'm not sure by changing my doctor, I'll think about it. Even though I have this feeling that he thinks there's nothing wrong with me, he's done more than other doctor's so far (allthough I would prefer to see a rheumy). I think I'll wait for the lab results first and then go from there.

I tried to find some more information about certain symptoms on this forum. I had to find out what post nasal drip was first, but that's something I have too. Also my glands in my neck are swollen a lot of times, I have a sore throat a lot of times and sometimes my voice is hoarse in the morning or when I talk a lot. As a child I had my tonsils removed (because of ear infections), but one grew back. It is swollen regularly. Can someone tell me if these can be symptoms of Sjogren? I tried to find out by searching this forum, but I'm not sure?

I was also wondering whether I should post these questions here or in the other board?

[journey]

I called my doctor today and was told that all my labtests are negative.
I've decided to end my journey after 12 years. I've had many tests and hardly anything was found, so I'm done with it.

I wish everybody all the best and thank you all for your help.

[Scottietottie]

Hi Journey 

You don't have to leave this forum. I'm sure you will still get support in here. As you must have read there are quite a few people in here who spent years looking for an answer and many still have negative blood work.

Take care - Scottie  (who knows what its like to want a test result that is positive even if in another way she doesn't want it!)

[Patze]

Hi Journey,

I often joke that I'm the sero negative queen, and in a way I do probably have more negative test results than most members here.  But you see, even though my blood work is still negative, the rheumy is treating me as though it's positive (he diagnosed me as having SICCA for the first several years and only changed that status about a year and a half ago).

I understand the sheer frustration of not being diagnosed and having a doctor give you the stink eye.  Egads, it reminds me of the GP that kept telling me that there was nothing wrong with me as the thyroid symptoms were just accelerating and she did nothing for almost a year (had a thyroid scan done a few or three months after I started to see her about these problems, and the report specifically said that I had a goiter that was pressing against my throat, several nodules on the thyroid, just lovely.  Finally had to push the issue before she referred me to an endo and he was surprised to say the least).

You know, sometimes your body is just not ready to give up it's secrets (shucks, I don't think mine will ever give up anything! ).  But the real question is your rheumy (or primary) willing to work with you with your symptoms?

Take care of yourself, and I hope that you'll stay -

Patze