What are the options for someone with primary progressive MS? I am 66 and was diagnosed after a spinal tap in 2008; am physically active (downhill ski, but less aggressively and at my own pace); have no visual changes due to MS; have some areas of cognitive impairment (mild) but other areas are very superior. My neurologist says that there is no treatment and the neuro-psychologist said to do activities like crossword puzzles or study a foreign language. I am satisfied with my physical status, but would like to limit my cognitive decline as much as I can.
Please see Dr. Kinkel's excellent blog post on cognition and MS (posted 7/22/2014) READ MORE
In addition, I would add that as we age, all can succumb to common problems that affect cognition. In this case, we can't assume that cognitive problems are solely due to MS (if at all). Your neurologist can help screen for other causes of cognitive dysfunction with the help of a neuropsychologist (which it appears you have already met).
What we have learned is that medical conditions that can affect blood vessels (ie, "vascular disease") such as high blood pressure, high cholesterol, blood sugar regulation problems, smoking, etc can encourage disease progression and affect cognition and also cause "little white dots" on the brain scan as well. These problems are more prevalent as we age. Moreover, the litany of other ailments that Dr. Kinkel lists in his blog post which contribute to cognitive problems are also more common as we age and should be taken into consideration when trying to tease apart potential reasons for your symptoms.
I do not have much more to add to what you are doing or what has been said in the aforementioned blog post. I would just emphasize the need to remain physically healthy to try and mitigate the other potential causes of cognitive difficulty. Specifically, work on aerobic exercise (with a goal of 30 minutes of continuous exercise a day, for 5 days a week), a balanced/healthy diet, and adequate and restorative sleep. Of course, consult with your doctors about the type and intensity of aerobic exercise that is appropriate for you.
I would also add one last thing...Dr. Kinkel suggests in his blog that our disease modifying therapies very well may mitigate cognitive dysfunction over time. I agree. I would also point out that our approach to treatment of MS is shifting. The term "primary progressive MS" is becoming a relic with alternative terms such as "active and/or progressive" as descriptors to a patient's MS activity. Reason for this is that even the "primary progressive" patients can have inflammatory disease activity (even if not recognized clinically or symptomatically) noted on the MRI scans. If this is the case, even a patient with the label of "primary progressive MS" could qualify for a disease modifying therapy because they are demonstrating "active" or "inflammatory" disease activity that likely will respond to an MS therapy (and could impact cognitive decline). I'm am not advocating for frequent/routine MRI scanning of progressive MS patients, but under the right circumstances (ie, worsening cognition), it should be considered.