Author Topic: Top Sjogren's Syndrome Centers in the USA  (Read 505 times)

vrystaat

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Top Sjogren's Syndrome Centers in the USA
« on: May 28, 2019, 07:28:17 PM »
My Rheumatologist has recommended to find a new Tertiary Care Center, because there is a shortage of Rheumatologists on the West Coast.
I do not want to create a Consumer Reports type of situation, and just wanted a list of the top 5 Sjögren's Syndrome Centers in the USA.
I would cancel my request if anyone thinks this may be too intrusive, or cause friction.
My Sjögren's Syndrome has existed for 32 years, with multi-organ involvement and no treatment has helped. I also have associated Polymyositis or perhaps Inclusion Body Myositis.
I have been given a 5 year Survival Rate of 3-5 years.

Thank you.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

SjoGirl

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Re: Top Sjogren's Syndrome Centers in the USA
« Reply #1 on: May 29, 2019, 12:23:07 PM »
While I did not have a good experience there others on this group have had success at Johns Hopkins. Another well-respected center is at the U of Pennsylvania in Philly. Check with the Sjogrens Foundation for other recommendations.

So sorry to hear about your life expectancy. Here's hoping you can find some help to turn that around.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

vrystaat

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Re: Top Sjogren's Syndrome Centers in the USA
« Reply #2 on: May 29, 2019, 07:23:53 PM »
Thanks for the information. Now that I've researched this subject, I found multiple inquiries like this.
I've added Univ of Penn, Mayo Clinic and University of CA San Francisco to my list.
My research has also shown that expert Rheumatologists are hard to find everywhere.
This is very sad.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

markt

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Re: Top Sjogren's Syndrome Centers in the USA
« Reply #3 on: May 30, 2019, 07:52:27 AM »
I have been to Hopkins and NIH in Bethesda (who also has a Sjogrens/Salivary Gland Disease unit).  They are sort of the same enterprise as it turns out, but both were the best experiences I have had to date.  I would encourage you to make the trip.

Mayo was less than helpful.  If you don't have SS-A/B, then you are discharged off on your own without treatment.  You really have to fit their box of what Sjogrens is to get anywhere with them.

Have you tried biologics, such as Rituximab?  I have read that it is also applicable in treating myositis and Sjogrens neuropathy...  I can vouch that is helps with glandular manifestations of Sjogrens.

Mark

vrystaat

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Re: Top Sjogren's Syndrome Centers in the USA
« Reply #4 on: May 30, 2019, 10:28:16 AM »
Thanks everyone. I am booked in to Johns Hopkins for July.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage