Badges (1)


Member has chosen to not make this information public.


Member not yet following any Groups.


Member not yet following any Pages.

Posts (3)

Jul 1, 2018 · Don't Want To Be a Complainer in Chronic Pain

I am so sorry you are suffering. I am a retired RN. I have been in fear that people who really need opiates for pain control won't be able to get them because of the opiate crisis. The doctors are running scared now! Have you tried going to pain management? You may want to think about medical marijuana and see if that might work for you. Tramadol does not work very well for severe pain. I agree with water therapy to obtain some relief

Jan 19, 2018 · Stiff Person Syndrome in Brain & Nervous System

Thank you for getting back to me. My sister was originally diagnosed with ALS in 2000 at the University of Pa. Hospital. She was later, 2010 taken out of the ALS diagnosis but still no diagnosis for what was wrong. She was finally diagnosed by Dr. Ogue, neurologist, at Shands Jacksonville with Stiff Man Syndrome and Dystonia. She brought her old EMG from 2010 and was diagnosed on the spot with SPS at Shands in October 2017. She received 30 Botox injections via EMG for Dystonia symptoms over a month ago. This appears to have made her symptoms worse. She is in a tremendous amount of pain. She is taking Valium and Baclofen now as well. Although we are grateful to the neurologist who finally diagnosed her, we are looking for another specialized neurologist to treat her long term for both SPS. We know there is an excellent neurology clinic at the Mayo in Jacksonville but they are not taking any new patients as hey are at capacity with no waiting list either. We are not sure where to turn. We appreciate any help and information you can provide. Thank you, Marita Kelly

Jan 18, 2018 · Stiff Person Syndrome in Brain & Nervous System

Hi. My sister was just diagnosed with Generalized Dystonia and Stiff Person Syndrome. We live in Ormond Beach, Fl. Just north of Daytona. We are having a difficult time finding a doctor to treat her. The Mayo in Jacksonville does not have an opening for this diagnosis. She has gotten one set of Botox injections from a doctor at Shands but she has gotten worse. We are unsure of where to turn. She has been prescribed Baclofen and Valium as well. She was neg for GAD and for cancer. They are calling this idiopathic Stiff Man Syndrome. In other words they really do not know why she has this disease. But it seems a small subset of people with Stiff Man Syndrome have the idiopathic type. Does anyone know a doctor in the Central or Northern Florida area who treats this disease? I would love to hear from anyone. Because she is so dilbiltated she cannot use the computer at the moment and I am helping her with the search. Thank you, Marita Kelly