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
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
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?
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.
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.
Valora, Are they still doing anything in Minneapolis?
I went to one but my rhumy had to refer me there first.
Steve
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.
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
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 ;D).
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
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.
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
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!
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
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
Hi Janna
My eyes did finally get better, the eye quack gave me the small bottle of thick eye drops to use since it helped, and he didn't have to throw it away!
I put cold compresses on my eyes to help them. I did tell him that my eyes feel like they had gravel in them which should have caught his attention.
It was about a year later that I was dx'd with Shogren's. I hope he read the newpaper article about me so he will know what the symptoms are!
I use the genteal eye drops and have to use them constanly now because it is so dry here in California and the smoke from the fires is tearing up my eyes, it feels like the inside of my eyelids are made of sandpaper and each blink makes it worse!
Take Care
Debora
There is a Sjogren's Clinic at the Hospital of the University of Pennsylvania (HUP). I don't know much about it. I do know that HUP has a very good reputation, it is a huge university and they do tons of research. Depending on how things go with my dr appointment in September, I might make an appointment. I read on one of the topics someone else goes there and is very happy.
There's also a clinic on the NIH campus in Bethesda, Maryland (US).
http://www.nidcr.nih.gov/Research/NIDCRLaboratories/MolecularPhysiology/SjogrensSyndrome/ (http://www.nidcr.nih.gov/Research/NIDCRLaboratories/MolecularPhysiology/SjogrensSyndrome/)
My son works for Johnson and Johnson repairing hospital equipment and said that Univ Of Penn is a great hospital from what he could see,, he has to go to about 70 of them all along the east coast and said thats prob one of the best besides the one in Baltimore,, JH?
Sjenny,
No they didn't do any dye injections in my Salivary glands, thank goodness. They had a little suction thing attatched to a thin tube that they stuck to the inside of your cheek where the salivary gland openings are. It collects the saliva in a little tube that they measure and compare to norms. Pretty low tech but it quantifies things and has norm values. I had a positive lip biopsy, positive ANA, SSA and decreased salivary output, positive Schirmers test, so basically all was positive, no doubt about the diagnosis once I went to someone who knew about Sjogren's. Things are manageable now that I started Plaquenil and an NSAID. No Prednisone or Methotrexate so far thank goodness.
Nancy
I go to the Sjogren's Clinic at University of PA in Philadelphia. It's worth every minute of the 2-1/2 hour drive!
It's not alot different than seeing a regular rheumatologist, except that the doctor who runs it, Dr. Fred Vivino, has began working on research for Sjogren's back when he was in medical school (and he's probably in his early 40's now) and has specialized in the disease ever since. (I found this out because I finally asked how he decided to specialize in Sjs - his mentor in medical school did early research on stimulating saliva)
Anyway, there aren't other doctors, such as eye doctors or dentists right there in the same office, but there is an eye doctor at HUP that works extensively with Sjogren's patients, and Dr. Vivino has a network of other specialists available if you need them.
The one HUGE difference I've found is the amount of time he takes with me. Now, obvioulsy, this means he takes that same amount of time with other patients and there are sometimes long waits) but if you need an hour to go over everything-like when I printed out a long list of complaints I'd posted here, he read through the entire post, then went through the issues individually.
I think probably the biggest advantage of a Sjogren's Clinic is that you know that the doctor has spent more time with this disease. But there are a lot of very good rheumatologist out there who don't work specifically in Sjogren's Clinics that handle the disease very well. I just couldn't find one here where I live in Northeastern PA and decided to take the ride to Philly.
Hope this helps, Tracy