Sjorgrens clinics

[fatburningmachine]

Sorry to post two new topics in one day, but I suddenly remember  a question I was going to ask. I am going to Minneapolis is a few weeks and by accident found there is a Sjogrens clinic there. Has anyone been there? or to an actual SS clinic? What would be the advantage of going to a SS Clinic  as to a regular rheumy? Do you know if they cover like the whole scheme of this syndrom? I am sure you can answer these questions and think of others that my brain fog won't let me think of right now. Thanks

[Pooh]

I am not familiar with Sjs Clinics but they sound interesting.  The closest thing I've come to one is what they are doing in our health group called Shared Appointments.  Your doctor makes appointments for 4 patients at the same time, with the same health problems and you get to review your problems in front of 3 other patients and listen to theirs.  I have no idea what they hope to accomplish with this, but I only signed up for one. 

I hope someone will have some more information on these clinics, I would be very interested in finding one locally.

Pooh

[Joe S.]

I live in Minneapolis, the only thing that I can think of is  maybe at the University of Minnesota. I have heard they are doing an investigation but I received no response to my email. What is the name of the clinic?

[fatburningmachine]

Joe, I read about it in the June   "Moisture Seekers". It had a bleep about the  National Patient conference award winners. Kathy Moser, PhD recieved an award  because she helped start two Sjogrens clinics- one in Minneapolis and another in Oklahoma City. That is all I know. If you live there and don't know about it, I think it must be hard to find. The one in Oklahoma City is with the Oklahoma Medical Research Foundation. i am not very computer literate, but someone might be able to find it.

[valora]

Kathy left Minneapolis to start research in Oklahoma. I got a letter asking if records could be transfered. I was in one of her studies.

[fatburningmachine]

Valora, Are they still doing anything in Minneapolis?

[Billydude]

I went to one but my rhumy had to refer me there first.
Steve

[valora]

No nothing in minneapolis.  The study was offered to everyone who went to conference in minneapolis a few years back. My name is still on list for future studies.

[JannaLee]

I live in Northern Minnesota and would appreciate if you guys would post any future helpful thing you hear about around here.

Sadly my dentist is a moron, as is my eye specialist.

It's always good to keep an eye out for better medical care.

Love to you all,
Janna

[Patze]

Hi JannaLee,

Your dentist and eye doctors are both morons?  That's tough, I just changed regular eye doctors, this one is a lot younger, and hopefully won't make a mistake on my prescriptions like the old one did.  The dentist I see is not well versed in SJS, but I'm breaking him in where painful, swollen lips are concerned; nope, I haven't bitten him yet (working on it though ). 

Can you get to a teaching hospital by any chance?  How about to a major city maybe?  I so agree with you about always keeping an eye out for better medical care.

Take care -

Patze

[Nancy60]

My Rheumy referred me to a Salivary Dysfunction Clinic at the Dental School here to have a lip biopsy, measure sailvary flow etc...They were knowledgable about Sjogren's and work closely with the Rheumatologist, but after the first couple visits, I stopped going as all they did was measure salivary flow etc...and I have a good dentist already.  If I ever develop problems my dentist can't deal with I will go back though.

[Sjenny]

Dear Nancy60:

Did they put dye through your parotid glands to measure saliva flow?  What was that experience like, was it unpleasant?

Best Regards,
Sue

[JannaLee]

Thank you for your note Patze!

Luckily I have a very brilliant Rheumatologist in Duluth, MN about 2 hours away.

My dentist (the only local guy who takes my insurance) says there is not a need to do anything special for your teeth when you have Sjogren's!  Whitening toothpastes are fine too, in fact he tried to sell me on his procedure to whiten my teeth.

I've read enough on this site to know he is wrong and I wanted to discuss a treatment plan to prevent further tooth decay and crumbling. (my front bottom teeth are crumbling!)
For example: gentle cleanings 3 times a year, fluoride varnish, prescription fluoride toothpaste, biotene products etc.

My Glaucoma specialist seems not to believe I have Sjogren's even though I was there for a visual field test to start on Plaquenil.  He wouldn't discuss my dryness, sensitivity to light, and poor night vision.  He said if I was so bothered by dryness why didn't I just get some Visine?

Mike Bartolatz dissuaded me of that advice as soon as I got home with the wrong kind of drops and saw stars from the stinging when I used them.

Thanks for letting me complain.  I am glad you have a young dentist, hopefully he will find your case interesting and read up on the very best ways to care for you.

I certainly will look for better teeth and eye specialists (in a University area) as soon as I get the energy.  UGH!

Best to you dear Patze!

[Debora]

Oh Janna

It sounds like you have been thru alot! 
I had problems with the eye specialist a few years ago,I went to prompt care because my eye balls were swollen, it freaked the doctors out, they called the "specialist" in town and sent me right over for an emergency visit.

After he did testing and looking up on the internet, he didn't know what was wrong.  I mentioned to him that when he put the thick eye drops in it made my eyes feel better (this was before I was dx'd with SS).  He finally told me he doesn't know what it is but if it gets worse to come back!  I told him if they get worse they will pop like balloons!  He made me mad and I made him mad....at least we agreed on that!

I didn't pay the emergency part of the bill and told them I will when he figures out what was wrong with my eyes!

I finally found a terrific eye doc who knows what SS is.  He takes more time to check everything going on with my eyes and explains to me what he is doing.

Good luck, hang in there!
Debora

[JannaLee]

Geeze Deb!

I am sorry for your frustrating experience but glad you shared the story!  It might come in handy some day to know swollen eyeballs can be a complication of Sjogren's Syndrome!...especially because my eye doc is not very clever.

Did your eyes just finally get better on their own?  Did you use moisture drops to help them?  How long after this episode before you realized you might have Sjs?

Janna