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Neurology (Expert Forum)
NEUROSARCOIDOSIS, SARCOIDOSIS
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
NEUROSARCOIDOSIS, SARCOIDOSIS
by KATHRYN-DORSEY, Nov 22, 1998 12:00AM
I WAS DIAGNOSED WITH SARCOIDOSIS LAST SPRING AFTER SUFFERING VERY TRAUMATIC & PAINFUL SYMPTOMS SUCH AS:
BELL'S PALSY AND FACIAL PAIN, HEARING LOSS, IMPAIRED EYE SIGHT, SEVERE VERTIGO, PAIN IN JOINTS AND MUSCLES, SEVERE FATIGUE AND WEAKNESS, SHORTNESS OF BREATH & PAIN IN CHEST WITH COUGHING, BIOPSY INDICATED GRANULOMAS ON LEFT LYMPH GLAND IN CHEST, NEURALGIC TYPE PAIN ON TRUNK OF BODY, FIBROIDS UNDER SKIN AT KNEES AND ANKLES, CONFUSION, DISORIENTATION AND LOSS OF MEMORY.
MY DOCTOR STARTED ME ON HIGH DOSES OF PREDNISONE WHICH HELPED RELIEVE SOME OF THE SYMPTOMS, BUT SINCE HE BEGAN TAPERING MY DOSAGE DOWN, ALL THE INITIAL SYMPTOMS HAVE STARTED COMING BACK. I SEEM TO BE A CHRONIC CASE!!
IS THERE A RESEARCH CENTER OR SPECIALIST NEAR VIRGINIA THAT IS TAKING PATIENTS WITH COMPOUND SYMPTOMS? MY DOCTOR, WHO SPECIALIZES IN INTERNAL MEDICINE, IS AT A LOSS AS TO WHAT TO DO WITH ME. I HAVE SEEN A LOCAL NEUROLOGIST, PULMONOLOGIST AND OPTHAMOLOGIST ALSO WITH NO RELIEF. I HAVE BEEN OUT OF WORK AND BASICALLY INCAPACITATED SINCE APRIL 1998 AND DESPERATELY NEED HELP!! ANY INFORMATION YOU COULD PROVIDE WOULD BE GREATLY APPRECIATED!! THANKS
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Dear Kathryn:
The management of neurosarcoidosis (and it appears that you really have this disorder) is difficult. Control of symptoms may require a high dose of prednisone for long periods, often with unacceptable side effects. Alternative therapies such as methotrexate, cyclophosphamide, azathioprine, cyclosporine, and radiation are also very toxic, and have little better than anecdotal proof of efficacy. Some cases are milder and may do relatively well; some others are unfortunate and have a rapidly deteriorating course.
One of the neurologists in the United States most interested in this rare disorder is Barney J. Stern at Emory, Atlanta. His e mail is ***@****. Some of us at the Cleveland Clinic also have an extensive experience in the management of neuroarcoidosis. You may want to see Drs. Richard Rudick, Jeffrey Cohen or R. P. Kinkel; their appointments can be made by calling (800)223-2273.
Member Comments
by Janice219, Apr 28, 2009 03:22PM
A related discussion, Need Neurosarcoidosis Specialist in FLORIDA was started.
