I have a salivary gland infection and the radiologist suspects onset of Sjogren. My GP does not go with this hypothesis and will first send me to a stomatologist (appointment in 3 weeks). My question is, when it is Sjorgen, does it matter for the development of the disease to have an early diagnose, or will it not make a difference if I only get this conclusion later. In other words, is there a sense of urgency with this illness to start treatment to diminish the development or not?
Hi Saradew
I cannot think of a reason why you should be seeing a stomatologist unless it is to exclude anything "sinister". Sjogren's is usually diagnosed by having a full blood screen to see whether you have a raised ESR, a high ANA titre together with positive anti-ro/anti-la. I have had SS since 1992 and have not yet had to take any medication to date. What I did have done was to have my tear ducts plugged with sillicone, which has worked well.That procedure was painless.
I hope this helps you.
Ich kann mich nicht zur Wahl des Spezialisten äußern, aber ich bezweifle, dass eine Verzögerung von 3 Wochen langfristig einen Unterschied macht. Viele Menschen brauchen Jahre für eine eindeutige Diagnose. Wenn die Speicheldrüseninfektion Ihr erstes Symptom ist, erhalten Sie ohnehin eine frühe Diagnose, also machen Sie sich keine Sorgen.
The stomatologist is indeed to find an alternative explanation for my gland infection. I understand my home doctor does not follow the radiologist because there is no history of auto-immune disease in the family. I am only worried that when it does turn out to be Sjogren, maybe there was something we could have done this first month to revert the onset, or decrease the damage to my gland.
I agree with Jennifer that 3 weeks probably won't matter, and that many of us go a long time without any treatment. Others in the plaquenil camp often feel differently simply regarding whether it's okay to go years-to-decades without any treatment.
Your doc is wrong: you can have any AI syndrome WITHOUT any prior diagnosed familial history.
All that said, if you're having problems with salivary glands it is important that you start treating your mouth/teeth as if you have SS. This means flossing, and it means using dry mouth toothpastes & mouthwash, and using them correctly. If you want to know more on that, PM me.
You'll also want to be sipping water all day. If you're in the States, a good filtration system for drinking water is helpful.
Ditto if you have dry eyes: start lubricating.
Many many docs know zip about AS and your gp may be one of those.
Oops! Last sentence should say "zip about SS."
Sarah,
It all depends on how long who have gone undiagnosed. In my case it took more than 10 years for diagnosis and as a result it impacted both my kidneys and now I am on transplant list and starting dialysis this month.
Not trying to scare you mine is one of the rare cases but it does happen, so don't delay it more than few weeks, if possible.
Hope it helps!
Wenn die Vermutung auf sekundäres Sjögren-Syndrom (Sjogren) zutrifft, wären Sie bereits wegen der Primärerkrankung in Behandlung.
Wenn die Vermutung auf primäres Sjögren-Syndrom (Sjogren) zutrifft, ist eine Diagnose dringender, da Sie nicht wegen einer anderen Autoimmunerkrankung behandelt werden.
Mundpflege ist unerlässlich...einschließlich einer zahnärztlichen Kontrolle alle sechs Monate...Verlust von Speichel zerstört die Zähne...trinken Sie jeden Tag viel Wasser
Augenpflege ist wichtig, weil Ihre Hornhaut austrocknen und zu Erblindung führen kann. Meine unteren Tränenkanäle wurden chirurgisch verschlossen und ich verwende Restasis.
Primäres Sjögren-Syndrom (Sjogren) ist in der Regel schlimmer als sekundäres.
Jedenfalls ist Sjögren-Syndrom (Sjogren) eine systemische Erkrankung...Sjögren-Syndrom (Sjogren) kann jeden Körpersystem schädigen.
Dass es dazu in der Lage ist, bedeutet nicht, dass es auch geschieht.
Achten Sie auf Ihren Körper.
Ein Rheumatologe kann Sie mit immunsuppressiver Therapie behandeln.
Freundliche Grüße
Judith
Können Sie mir bitte etwas über die chirurgische Okklusion erzählen - wie war es, sie durchzuführen, und welche Ergebnisse gab es? Merken Sie einen deutlichen Unterschied als Folge davon? Mein Augenarzt empfiehlt dies, aber ich bin mir der garantierten Vorteile nicht sicher.
Everyboday, Sjorgren's, is the sjorgren's antibody blood test definitive of secondary sjorgren's? Lab results not in yet. but I have pain/swelling in my throat, cannot clear throat, troublee swallowing, and extreme fatigue for more than a year now. been to all kinds of doctors, all of whom pass me on to another doctor.
Hi Kris
The Sjogren's ANA test is only one of the barrage of test that are needed to definitively say that it is SS. First of all the ANA titre must be high (mine is 1:5120), a raised ESR, positive anti-ro and anti-la, positive Schirmer test and a slit lamp test in conjunction with the Rose-Bengal dye test. Red, dry eyes and a dry throat is added into the mix.
And that's only the start.........
Good luck
Michael