I am a 51 yr old female diagnosed with ms in 2007. For years I would have several symptoms (as I look back) but about 3 yrs prior I began having double vision. The onset was sudden and MRI revealed a leasion on the brain stem. The double vision has never changed. A spinal tap revealed 5 O bands and along with blood work was given the diagnosis. At that time my doctor thought it was RRMS and I started Copaxone. I took it for 3 yrs with no change. We tried Rebif and Avonex and still I seemed to progress with my symptoms, but really had no clear relapses or remissions. The doctor felt that I was in secondary progressive and there really was no point in continuing meds other than to treat symptoms. I experience a lot of pain. Sometimes to the point that nothing helps. Some say that pain is not common symptoms of MS. Then pain is all over, but affects different places at different times (like one leg worse than other or maybe affect an arm worse a few hours later). It is so very hard to explain. Along with every other symptom of MS, plus other things that would take too long to explain, would it be your opinion that I may have been primary progressive all along and do you recommend any treatment that would be beneficial? I am just trying to get some opinions and I do appreciate your time.
Based on the information you have provided, I would NOT describe your MS as primary progressive. Advising you on further management would require a more detailed evaluation. Good luck
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego