Author Topic: Sjorgrens clinics  (Read 6758 times)

Debora

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Re: Sjorgrens clinics
« Reply #15 on: July 07, 2008, 10:48:39 AM »
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

dearli13

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Re: Sjorgrens clinics
« Reply #16 on: July 10, 2008, 07:52:32 AM »
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.

Starlore

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Re: Sjorgrens clinics
« Reply #17 on: July 10, 2008, 08:47:28 AM »
There's also a clinic on the NIH campus in Bethesda, Maryland (US).

http://www.nidcr.nih.gov/Research/NIDCRLaboratories/MolecularPhysiology/SjogrensSyndrome/
« Last Edit: July 10, 2008, 11:06:05 AM by Starlore »

navydad

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Re: Sjorgrens clinics
« Reply #18 on: July 10, 2008, 12:43:51 PM »
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?

Nancy60

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Re: Sjorgrens clinics
« Reply #19 on: July 10, 2008, 05:21:37 PM »
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

ktfabian

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Re: Sjorgrens clinics
« Reply #20 on: July 11, 2008, 03:56:33 AM »
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
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55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.