So frustrated

[turnbacknow]

Hello all, I posted a few days ago asking questions about one sided parotid pain and only partial dryness. I would have severe dryness at night, but fine during the day. Now I seem to be only slightly dry at night and fine in the day?

I am just so confused, as I suppose, are so many people dealing with the  rather elusive nature of auto immune disease.

As I sit here, wondering if I should see an ENT, my Rheumy, or a Dentist....I just can't figure out how a person is supposed to figure all of this out.

My rheumy diagnosed me with Undifferentiated Connective Tissue Disease 2 years ago, and more recently diagnosed me 6 months ago  with Sjogrens, based on pain in the left parotid area, swollen lymph glands on that same side and a slightly positive speckled ANA, along with all of my other aching, fatigue, brain fog etc.

I have had a good 5 months, and now the aching is back, the pain in my left parotid area is back, no swollen lymph glands, but the fatigue is here like crazy.

Do I go to the dentist again and have them take more xrays to confirm it is nothing wrong with my teeth?

Do I go to an ENT and have him look, possibly do a biopsy? (I have little money and no insurance)

Or do I just wait it out?

Do any of you deal with this kind of dilemma?

I just wish that there would be something STRIKING, like.. EXTREME DRY MOUTH, TERRIBLY DRY EYES, etc. Everything thing with me seems to dance around, never making a true appearance, and if it does, not for very long.

Thanks for letting me vent, I am supposed to be getting ready for my ENT visit... which I have no means to pay for : (

Darlene

[Scottietottie]

Hi Darlene 

If you are in any kind of remission - be happy about it!! Honestly - don't wish for a rush of symptoms. When they are there and there is no let up - you really won't want them!

As you seem to be flaring, the rheumy would be the one to see. In my case, because my SjS is not very severe, I now only see my rheumy once a year. I know he will see me more often if circumstances change.

Be extra careful about your oral hygiene. See your dentist for your regular checkups (in the UK that's one every 6 months) and if anything pains you - go and get it seen to.

If a doctor hasn't suggested a biopsy - I wouldn't go looking for one. You have a diagnoses so now it's a case of living with it the best wa you can.

You may never get the totally dry eyes and mouth. I hope you don't. It's described as progressive but can also come to a grinding halt.

Treat the symptoms you have and consult about new symptoms if and when they arise. Don't worry about what may be round the next corner - it may not be!!

If your symptoms are mainly ENT - then that's a good doc to be seeing - but if it's a flare - the rheumy is prolly a better bet.

Take care - Scottie 

[JannaLee]

Dear Dar,

I think a rheumy is the doc you would see if you are having a flare up of symptoms.

Are you taking anything to slow the inflammation?  Plaquenil or Methotrexate?

Probably that is what the rheumatologist would prescribe to help with fatigue and maybe also the swollen parotids.

Just my guess on this.  Hoping you are back to feeling good very soon!

Janna

[Seeker]

Dar I agree with the previous posts.  See your Rheumy and your Dentist. 


Seeker