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1. Mayo Clinic: http://www.mayoclinic.org/
Minnesota: 507-538-3270 7 a.m. - 6 p.m. CST M-F.
Arizona: 800-446-2279 (toll-free) 8 a.m. - 5 p.m. MST, M-F
Florida: 904-953-0853 8 a.m. - 5 p.m. EST M-F.
2. Johns-Hopkins: http://www.hopkinsmedicine.org/
U.S.: 1-855-695-4872 (toll free) 8 a.m. - 6 p.m. EST, M-F.
International: +1-410-502-7683 7 a.m. - 6 p.m., EST, M-F.
3. Massachusetts General Movement Disorders Unit: http://www.massgeneral.org/neurology/services/
Boston: 1-855–644-6387 EST
4. USFC Medcial Center: http://www.ucsfhealth.org/
San Francisco: submit an online request. They prefer a doctor referral.
5. Cleveland Clinic: http://my.clevelandclinic.org/
Cleveland, Ohio: 866-320-4573 7 a.m. – 11 p.m. EST every day.
International: +001 216-444-8184 7 a.m. - 5 p.m. EST
Weston, Florida: 877-463-2010 7 a.m. – 6 p.m. EST M-F
8 a.m. – 12 p.m. EST Sat. Closed Sun. and Holidays
Las Vegas, Nevada 702-483-6000
Toronto, Ontario, Canada: 888-507-6885 8 a.m. – 5 p.m. EST Mon. – Fri.
Abu Dhabi, UAE (2015) 216-445-2305
6. UCLA Medical Center: http://www.uclahealth.org/
Westwood, California: 310-794-1195.
Santa Monica, California: 310-319-5098
7. Northwestern Memorial Hospital: http://www.nm.org/nm/home
Chicago, Illinois: submit an online request: https://ww2.nmh.org/contact/request_appointment/new_patie nt
8. The Stanford School of Medicine: http://neurology.stanford.edu/
Stanford, California: 650-723-6469
9. Rush University Medical Center: http://www.rush.edu/rumc/
Chicago, Illinois: 888-352-7874 8 a.m. - 5 p.m. M-F. http://www.rush.edu/appointment/appt_form.html
10. Tufts Medical Center: https://www.tuftsmedicalcenter.org/
Boston, Massachusetts: 617-636-5848 EST.
11. Barrow Neurological Center at St. Joseph's Hospital http://www.thebarrow.org/index.htm
Phoenix, Arizona: 1-877-227-7691. MST
12. IU Health Neuroscience Center http://iuhealth.org/neuroscience-center/
Indianapolis, Indiana: schedule an appointment online or call 844- 848-4325, 8 am – 4:30 pm, M-F.
13. Emory Healthcare Movement Disorders
Atlanta, Georgia: 1-800-75-EMORY (404-778-7777), 7:00 am-7:00 pm, M-F EST.
14. Penn Medicine Neuroscience Center
Philadelphia, PA: 800-789-PENN (7366)
Request appointments online 24 hours/day, 7 days/week
15. Vanderbilt Department of Neurology http://www.mc.vanderbilt.edu/
Nashville, Tennessee: physician referral only 615-936-0060.
16. University of Rochester Neuromuscular Disease Center https://www.urmc.rochester.edu/neurology/
Rochester, New York: 1-888-661-6162. EST.
17. Thomas Jefferson University http://hospitals.jefferson.edu/
Philadelphia, Pennsylvania: https://appointments.jefferson.edu/
18. Yale Movement Disorders Clinic
New Haven, Connecticut: 203-737-5259 or 203-785-4085.
19. Lahey Hospital and Medical Center Movement Disorders Center http://www.lahey.org/
Burlington, Lexington, and Peabody, Massachusetts and southern New Hampshire: 781-744-1270.
20. Beth Israel Deaconess Medical Center, Parkinson's Disease and Movement Disorders Center. Boston, Massachusetts: http://www.bidmc.org
*This list is US-centric and we are happy to add international locations. Please share your recommendation by emailing it to firstname.lastname@example.org.
If at all possible, it is best to work with your local healthcare team. They can facilitate an appointment at specialty clinics. At times, it is necessary to seek an appointment on your own. Always communicate with your insurance company to find out whether a visit is covered and how you should proceed to get approval or submit a claim. Visit the clinic’s site and familiarize yourself with their procedures, costs, requirements, etc. Make certain you have copies of all pertinent medical records, scans, test results, etc. After your evaluation, you will be returned to your local healthcare team with recommendations for monitoring and management of your diagnosis.
The advantage to visiting a specialty clinic is two-fold: firstly, they are sent the most difficult diagnostic cases and are more likely to be knowledgeable about rare diseases. Mayo and Cleveland utilize an interdisciplinary approach to diagnosis. This means you will be seen by several specialists who collaborate to find answers. They have access to specialized testing equipment and processes. There are movement disorder clinics or hospitals with specialized neuromuscular departments. They are better able and have more resources to tackle hard cases.
It may be difficult to find a neuromuscular specialist knowledgeable about stiff-person syndrome in your location.
Mayo was the home of Moersch and Woltman and Dr. Dalakas researched from the National Institutes of Health.
Several online support groups have shared their stories and recommendations. https://www.facebook.com/groups/StiffPersonSyndrome/
In terms of treatment, new studies are being conducted on immunomodulation therapy and hematopoietic stem cell therapy. Your neurologist will start with benzodiazepines and baclofen as a first line of treatment and move onto IVIG or plasmapheresis. Patient reports vary on the success of the various treatments. Finding the right combination of therapies takes time and patience. That is why it is critical to have a local physician who can work with you long-term.
Hopefully, by spreading awareness of what stiff-person syndrome is - and is not - more professionals will become educated in early recognition and effective treatment of the disorder.
When your local resources can’t help, it may be time to consult a specialty clinic or hospital.
SPECIALTY HOSPITALS AND CLINICS
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