Chicago Area - Neurosarcoid Specialists

Hi everyone! I'm wondering if anyone can pass along names of doctors specializing in neurosarcoidosis in the Chicagoland area. My Rheumatologist is one of the best in the NW suburbs but he's only treated one other case. He's talking about sending me to Mayo Clinic or Cleveland Clinic and in a quick search of the local hospitals attached to Universities I couldn't find and neuroimmunology departments. Any recommendations would be great. Thanks!

Report post

5 replies. Join the discussion

SpecialtyWho Treat This Condition
Sherrie Bullard, M.D.
Beverly Cameron, M.D.
Jeffrey Chapman, M.D.
Daniel Culver, D.O.
Egbert de Vries, MD
Scott Flamm, M.D.
Andrew Garrow, M.D.
Thomas Gretter, M.D.
Philip Hashkes, M.D.
Constance Jennings, M.D.
Jeffrey Kanne, M.D.
Rute Paixao
Joseph Parambil, M.D.
Melissa Piliang, M.D.
Robert Piloto, M.D.
Franck Rahaghi, M.D.
Rochelle Rosian, M.D.
Hina Sahi, M.D.
Steven Spalding, M.D.
Margaret Tsai, M.D.
Charles Winans, M.D.
Qingping Yao, M.D. Care Providers

these are the doctors that deal with sarcoidosis at cleveland clinic. it would all depend on where you sarc monster is . do you have it in the lungs ? i personally see dr. joseph parambil. i currently receive remicade infusions once a month . i hope this helps you. i highly recomend cleveland !

Report post

There is a Neuroimmunology Division within the Neurology Dept at Northwestern Memorial Hospital in Chicago. If you do a quick online search for the Northwestern University Ken and Ruth Davee Dept of Immunology, you should get some results. I hope this is helpful. Best of luck to you!

Report post

Sarcoidosis-Specific Organizations
The Cleveland Clinic Sarcoidosis Center of Excellence
The Cleveland Clinic Foundation (A90)
Department of Pulmonary & Critical Care Medicine
9500 Euclid Avenue
Cleveland, OH 44195
216.445.1233 or 445.6972
216.445.8794 (fax)
Sarcoidosis hotline 866.783.3679 or 216.445.8160 (fax)

Foundation for Sarcoidosis Research
122 South Michigan Avenue Suite 1700
Chicago, IL 60603
312.322.0808 (fax)

Site provides basic information about sarcoidosis, research information, patient information, and other resources

National Sarcoidosis Resource Center
P.O. Box 1593
Piscataway, NJ 08855-1593
732.699.0882 (fax)

Site provides links to other sites, videos and books for purchase, and microscopic images of sarcoidosis.

Sarcoidosis Center
6005 Park Avenue Suite 501
Memphis, TN 38119
901.761.5877 or toll-free 866.SARCOID (727.2643)
901.761.2280 (fax)

Site provides general information on sarcoidosis; newsletter, books and articles; extensive internet links; clinical trial information; and a worldwide directory of sarcoidosis experts.

Sarcoidosis Network Foundation
11428 East Artesia Blvd, Suite #10
Artesia, CA 90701
562.809.8182 (fax)

Site provides general information on sarcoidosis; information about events and meetings, and other information

Sarcoidosis Networking Association
5302 S Sheridan Ave
Tacoma, WA 98408

Site provides basic information on sarcoidosis, links to support groups and other sites, upcoming sarcoidosis meetings and events, and a newsletter.

Sarcoidosis Research Institute

Site provides links to other sarcoidosis resources, bibliography of published articles, and information on clinical trial participation.

Other Organizations
American Academy of Dermatology
1350 I St. NW, Suite 880
Washington, DC 20005-4355
202.842.4355 (fax)

American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038
800.GO.Liver (465.4837) toll-free
888.4HEP.USA (443.7872) toll-free

American Lung Association of Ohio, Northeast Region
6100 Rockside Woods Blvd. #260
Independence, OH 44131
216.524.LUNG (5864)
216.524.7647 (fax) (national web site)

Arthritis Foundation
P.O. Box 7669
Atlanta, GA 30357-0669
Toll-free 800.568.4045

National Eye Institute
31 Center Drive MSC 2510
Bethesda, MD 20892- 2510

National Heart, Lung, and Blood Institute (NHLBI) Division of Lung Diseases
P.O. Box 30105
Bethesda, MD 20824-0105

National Institute of Arthritis and Musculoskeletal and Skin Diseases
1 AMS Circle
Bethesda, MD 20892-3675
301.495.4484 or 877.22.NIAMS (226.4267)
301.718.6366 (fax)

National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20824
Toll-free 888.FIND.NLM (888.346.3656)

Ocular Immunology and Uveitis Foundation
Massachusetts Eye Research and Surgery Institute
348 Glen Road
Weston, MA. 02493
617.494.1431 ext 112
617.797.8660 (support group)

Other Helpful Web Sites
National Institutes of Health

Site provides a list of clinical trials recruiting patients with sarcoidosis.

National Library of Medicine (Medlineplus interactive tutorials)

Sarcoidosis interactive tutorial provides excellent, easy-to-understand information on the condition.

National Library of Medicine (Medlineplus)

maybe this will help too ! btwy i have neurosarcoidosis too !

Report post

I really like Dr. Sweise at the University of Chicago rhemtology. I saw her once. She is now my quaterback. She took me serious. She has traveled the world and has learned about Sarc. She has many collegues that specialize in this disease. I have faith in her. I have seen her endo doctor at the university and I really like her too. dr. tamera vokes endocrine doctor, excellent!!! I wish you luck with a doctor you like. I feel confident with this university. Let me know if I can be of any further help.

Report post

I know it's not in the Chgoland area, but Froedtert Hospital in Milw. is starting a neurosarc clinic. My husband has neurosarc & we were down there on Mon. (6/15); his neurologist - Dr. Alex Barboi (he's actually a neuro-muscular spec.) told us they're starting a clinic (devoted to just neuro sarc), as they're seeing a lot of it.
Dr. Barboi is very knowledgeable & patient. We are former Chgo'ans living in WI - Dr. Barboi did his internship at West Sub. Hosp. in Oak Park & his neuro. residency at Pres. St. Luke's in Chgo.
Best of luck no matter who you choose. By the way, my hubby just started Remicade treatment, with no bad side effects. He has major muscle atrophy is his rt. thigh & left hand.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders