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Ask The Neurologist

Dr. Scott Newsome of the Stiff Person Syndrome Center at Johns Hopkins Medical

Dr. Scott Newsome is a leading expert on Stiff Person Syndrome. He has researched the disease for more than a decade, and established the Stiff Person Syndrome Center at Johns Hopkins Medicine.

Get notified when we publish the next installment of our exclusive interview with Dr. Newsome — subscribe to The Stiff Person Syndrome Research Foundation newsletter here.

What is Stiff Person Syndrome?

DR NEWSOME:  SPS is an autoimmune, neurological condition where, even though we don’t know the primary cause, the immune system gets angry and is misdirected to attack the nervous system in a way that causes signs and symptoms we see in patients: horrific spasms, generalized pain, eye movement issues, problems walking, there’s a full spectrum people can experience with this condition.

When you are dealing with a neurological disease, there’s a lot of overlap, so that early on in SPS, patients can be in chronic pain but have a normal neurological exam. That’s why some physicians incorrectly consider them psychiatrically unwell. It is a really challenging disability, but at the core is the immune system.

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                                                  Ask the Primary Care Physician

                                                  After being dismissed by her former primary care physician, a host of specialists, and multiple ER doctors, Tara found her quarterback in Dr. Assil Saleh.

                                                  Dr. Saleh listened, recognized there was a serious medical issue, provided a critical referral to a local neurologist who correctly diagnosed Tara, and expedited the process to be seen at The Mayo Clinic and Johns Hopkins for desperately needed treatment.

                                                  With so many limits and pressures on medical doctors today, getting to the diagnosis of a rare disease is especially challenging. Here Dr. Saleh describes her playbook to becoming a patient’s quarterback.

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