This is most definiately a stupid question but I am still new with this so please be patient with me.
I was lying in a very sofisticated (looked very expensive) device where some "scannerstuff" came down close to my head. I got an infusion in my arm so I "radiated" and the scannerstuff could "read" and take "pictures" of how much saliva i had. After 15 min I had some "citruswater" to drink and then they took some more "pictures" to see if the saliva increased.
Can you please tell what they did and what it is called?
I will then be able to ask you a question about the result (where I hopefully do no sound like an idiot ...).
Thanks!
Sven
Maybe scintigraphy or sialography?
Quote from: Crymeariver on May 23, 2012, 03:36:31 PM
Maybe scintigraphy or sialography?
Thanks a lot!
Pretty sure it was scinitigraphy. The thing is that my doctor told me that he was pretty sure i did not have Sjs because:
After i have had the "citruswater" my level of saliva was normal again and this would "never" be the case if i had Sjs.
BUT, if there is one thing I have learned here is that you should not belive your doctor when his says no Sjs because og negative testresults.
What is your opinion, is he right on this one (I do hope so!)?
(I will meet him again next week and he said he will explain more then but I really want to be prepared)
Ask for a blood test.
I don't think that the doctor's comment about "citrus water" is correct. IF... by citrus water, it was water with something like lemon, lime, grapefruit or other acidic element in it.
I did tests for my salivary function, and one of the tests was that I spit every 30 seconds for about 5 minutes, and then they measured the result. (In my case, not much!). Then they repeated the test, swabbing lemon juice on my tongue, and measured that. I was told that it was normal to have more saliva after something acidic, even with Sjogren's. The test was being done by someone pretty well known in the medical community for treating Sjogren's oral issues.
Now, I don't know the details of your results... so there may be something else going on here... but...
Quote from: jazzlover on May 23, 2012, 05:32:24 PM
Ask for a blood test.
I have done all bloodtest and they are all negative.
Quote from: warmwaters on May 23, 2012, 06:01:42 PM
I was told that it was normal to have more saliva after something acidic, even with Sjogren's.
He said that my saliva was "normal" when stimulalated and that would definately not be the case if I hade Sjs.
Is he right?
I have all the other symptoms of Sjs (tired, really dry mouth and eyes (and ears, hands and so on ...)) and I really need some treatment so please help.
I had the spit test done at the University during a Sjogrens study that was going on.
I sat in the dentists chair. The attached a little suction cup on othe inside of my both my cheeks where the ducts open from the parotid glands. These little suction cups had plastic tubing attached and a syringe attached to the end of it.
They took straight lemon juice on a swab and applied it to the middle of my tongue. They then waited a certain amount of time and then extracted the saliva that had been secreted. One isde was slightly low and the other side was very low.
This was a very low tech and cheap way of checking my saliva.
I think you might want to find another doctor to check things out. You may want to take a rest for a month or so til you get replentished from all the medical testing you have had.
Get copies of all your testing and then you can talk to another doctor about what else you might need to have done. Remember, you do not have to have positive blood work to prove you have Sjogrens. In fact, a doctor should treat your symptoms, not the blood work.
I also don't agree with the doctor about the need for no saliva, etc. The reason I say that is everyone is different. I got a slightly dry mouth years ago and my eyes did not get dry until after I was diagnosed. The most prevalent symptoms I had were dry lungs with thick mucus rattling around when I breathed, neuropathy (balance issues), GERD, joint pain and swelling, fatigue, frequent sinus infections and a lot of back pain.
Sometimes people don't even have a dry mouth until years later. EVeryone is different. You need to keep on with the doctoring til you find one who will work with you.
When looking for a new doctor I would now advise ( I didn't know this years ago) asking to talk with one of the office nurses and find out if they see a lot of autoimmune diseases/Sjogrens in their practice. Also ask if there is a doctor she could recommend who is interested in this aspect of medicine. It pays to be proactive for your own healths sake and in order to keep the cost down.
If you are able to call your state medical board and ask for a list of doctors in the area who deal with autoimmune diseases. Sometimes there are some on their list that you would not find in the yellow pages, etc. Good luck. Irish ;D
Thanks irish, you are always very kind!
The problem is that in the country i live in are there not many doctors that knows much about this disease. It?s not like in the States where you seem to have a lot. And the guy I am seeing is supposed to be the best. And if I don?t really trust him - then what? There has got to be some special guy here in Europe. The trouble is to find him or her...
Hi Sven
I have a severe Primary Sjogrens. Propably lymphoma aswell now but!
Not dry mouth nor joint pain. Maybe thats why the doctors in sweden have missed my diagnos for fourteen years!?
Have almost all other disabilities, maybe you have to do the lip biopsi if you want to be sure?
Good luck!
Regards Tony
Hi Sven
Which doctor are you seeing and where is he located?
Regards Tony
Quote from: Tuurre on May 24, 2012, 04:44:24 AM
Which doctor are you seeing and where is he located?
I have sent you a personal message (in Swedish!).
Good luck to you both, Sven and Tony. I hope you find a doctor there to support treatment so you both feel better.
Take care,
Genko
I find it very interesting that Sweden doesn't have that many doctors that know about Sjogrens. The disease of Sjogrens was brought to the forefront by a Swedish doctor named Sjogren. The Disease is named after him. Good luck. Irish ;D
Irish-
yes.
That is what I had running through my mind as well.
eye2dry
I hardly have any saliva either, another friend at work who has a bit of a dry mouth bought us Haribo tangtastics (they must have something citrus in the coating) when she eats them she gets a rush of saliva. The only time this happens with me is with my salagen. Maybe they can prescribe this for you even if your tests are negative. I'm sero negative and my Rheumy did.
I completely agree with Irish. Dry mouth is just one SJS symptom. If you have others, I'd think that the diagnosis should still be on the table as a possibility unless they've found evidence for something else or additional evidence against Sjogren's. Everyone's case is different, and not everyone with Sjogren's has all of the "hallmark symptoms."
For me, dry mouth was the last symptom to show up--after dry eye, after lung issues, after fatigue and joint pain. Well after, in fact. Even now my salivary glands work and would probably respond to the citrus water. And that's coming from someone with positive blood work and fairly firm diagnosis!
A lot of doctors have strange ideas about Sjogren's (someone here posted once that her doctor said she couldn't have it because her skin wasn't like leather!). If you think your doctor is open to being educated, you might want to bring in some information from the Sjogren's Syndrome Foundation (such as this page: http://www.sjogrens.org/home/about-sjogrens-syndrome/diagnosis). If not, you might want to consider another doctor if that's possible, and if it's not, you might want to talk to your general practitioner to see if he/she can help you.