Finally a diagnosis!

[matildamillicent]

Yesterday I saw my specialist who deals with my dry mouth. She's a dentist by trade, but because she did her degree overseas her qualification isn't accepted, so she went on to do a PhD in autoimmune diseases of the mouth (Sjogren's and Crohn's Disease). I'm so fortunate to have because I haven't heard many other people getting to see a medical specialist who deals with the dry mouth specifically.

As you can see from my signature, it's been a long process of getting any answers. But yesterday she diagnosed me with Undifferentiated Connective Tissue Disease, but said my symptoms were part of the "Sjogren's family" and I will be treated as such. My saliva flow test went from 0.02mls per minute to 0.05mls, so now I just have a normal dry mouth rather than a 'dangerously' dry mouth, which she puts down to Plaquenil.

But she said the reason why my lip biopsy was negative is because the damage/inflammation beings in the saliva glands under your chin, then to the ones where the lip biopsy is taken, then to the upper ones where you get the swelling of those big glands. She said I had swelling on the saliva glands under my chin. She also said my blood tests are probably just under the positive line. She said that I should stay on Plaquenil for at least the next 3 years as it might put it into permanent remission.


So I'm feeling really thankful that I finally have a diagnosis of such. But I'm wondering if anyone has ever heard this about the damage of the saliva glands occur in this pattern? And has anyone found an improvement in either quantity or quality (this is something else we discussed) of their saliva since starting Plaquenil?

Thanks =]

[Joe S.]

I am glad for you that you got a DX and you found a doctor that you like. These are two challenges that seldom get resolved for a lot of us. I am happy for you.

[irish]

I am so glad to hear that you got a diagnosis. Man, you are so lucky to have such a great doctor.Do you think your could get a group rate. I would like it if you could PM the name of your doctor. I would like to give her name to my immunologist as it would be nice if he would have time to touch base with her. If you can't, I understand.

Anyway, I am beginning to suspicion that the plaquenil is thinning my mucus. I am having such a "unloading" of the glands under my tongue/chin. This occurs usually after supper. It seems that I am dry in the morning and as the day progresses I get more and more drainage.

My mucus is not normal and I still think that there is some low grade infection that lingers in those glands. They have not drained well for so many years and I have had so many infections and think that it is hard to clear that infection.

Also, I have been started on a steroid to my sinuses. It is one that is normally in an inhaler but also comes in the ampules with the tear off top. I mix it with my boiled distilled water with soda and salt added and then irrigate my nose. I did this at full strength for one month and now do it at half strength every other night. I could feel the swelling decrease in my nasal tissue and sinuses.

I am not nearly as plugged up and I have more nasal drainage and can even blow my nose on occasion--which is something that has been very rare for a long time. My mucus is not normal and I doubt that it ever will be as I have had this for way too many years.

But, yes, I think it is helping. I wonder how many people have the kind of mucus issues that we do who are able to make this assessment? Good luck now. Irish

[Patty]

Yay! I am happy for you - this process of diagnosis is so long and difficult for us. Sounds like you have a wonderful and knowledgeable doctor. I had never heard that about the inflammation before and it makes perfect sense now that my lip biopsy showed inflammation but not enough to meet the criteria. My opthamologist specializes in Sjogrens and gave me a dx anyway. He said my symptoms were classic and my Schirmers was 0 on both eyes.
Congrats sounds weird I know, but really it is a big step forward for your health care.

[4Kids]

That is definitely how things are for me after the attack. Swollen submandibulars. Plaquenil has definitely got my rate up, and I had none before. My unstimulated rate is very poor now but better than it was. Also Plaquenil has affected me in the opposite order, as in my parotids began to work first, then my throat and lips, and the submandibulars last.

I would also appreciate the name as my rheumy does not believe much in Plaquinel. I feel so much better on it and yet I know she will ask to remove even though my need for the other meds w it is very greatly lessened. I will happily do another two years for the chance to keep it permanently in remission as I am getting so close to that.

Very happy for you that you have found such great help.

Jackie