I am not on any disease modifying medications and this concerns me. I was diagnosed 3 years ago at age 55. I have had 3 opinions of my type of MS. 1. Benign or quiet MS from my hometown neurologist 2. Primary Progressive MS from the Harper Medical Center in Detroit and 3. No label from Cleveland Clinic. I have had 4 MRI's and there is no change from the initial findings of 4 lesions in brain and 2 in my cervical spine. I feel that my symptoms are progressing. My gait seems to be off and I experience numbness, involuntary toe movements and sensations in limbs. I have fallen a couple times from my leg giving out. Should I be concerned that I am not on any medications?
If you think about it, it makes no difference which MS specialist was correct about your disease type. Although I suspect that your condition is hardly benign by your description, in all of the disease types described there is no evidence that standard disease modifying therapies for MS are beneficial.
But this does not mean there is not a lot more that can be done to help you! I would return to one of your MS specialists and tell them about your symptoms and your falling. Ask them what symptomatic and rehabilitation therapies can be used to improve your symptoms and maximize function. Remember, the only treatments demonstrated to improve function in MS patients is resistance training and aerobic exercise programs. You just may need some help getting started.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego