First a little background on myself. It took me 10 years to get diagnosed. My Neurologist and I have discussed the fact that at the time of my diagnosis I may have already progressed to SPMS. I started taking Avonex, then Copaxone, tehn Tecfidera and finally Gilenya. Obviously the first three did not work out for me and I had a bad reaction to Gilenya. I also tested positive for the JC Antibodies ruling Tysabri, by my choice. Now I am not taking any DMT's.
Since getting off any DMT I have noticed I have noticed a changed in my symptoms. I have become more moody and I have been having Migraines on a regular basis. I have also noticed my other symptoms have ramped up, being the pain in my legs and fatigue.
So my question is as follows, is it possible that my MS is progressing as my Neurologist and I have theorized? And am I moving closer to SPMS if I am not already there? Thank you in advance for answering my question.
The transition to Secondary Progressive MS (SPMS) is not a single point in time, but in the real sense of the word--a transition. Individuals can still have relapses during this transition as well. With that said, we are trying to get away from these disease subtypes/monikers because it doesn't really help us much in terms of treatment recommendations. As a field, we are trying to move to a paradigm where we ask a very simple question: Is your MS still inflammatory? The reason why this is important is that our disease modifying therapies (DMTs) are designed to reduce inflammation. While it is true that we tend to see less signs of inflammation in the classically described SPMS (and primary progressive MS), there are individuals that still demonstrate inflammatory disease activity despite their diagnostic assignment to a progressive form of MS. Inflammatory disease activity is manifest by clinical attacks (or relapses) of MS, and signs of new, enlarging, or enhancing lesions on MRI of the brain and spinal cord. In my mind, these objective findings outweigh the older MS descriptors--that are somewhat arbitrary. In order to determine if someone is inflammatory (or progressing), this should be done with the help of a neurologist who has been tracking your exam over time (preferably with objective measures such as walking speed/time, cognitive performance testing, and the neurologic exam).
This is important because not all symptoms (perhaps those you are describing) are due to new or inflammatory disease activity, but is a manifestation of older MS scars that are disrupting nerve signal transmission. There are many reasons that can occur, and the neurologist can help determine if this is the case. In many instances, conservative measures can go a long way in mitigating those symptoms (that are not due to a new MS attack) to make your function in daily activities easier. I would not necessarily interpret an increase in symptoms as a sign of progression to SPMS. That determination should be done with objective data obtained by a neurologist over time.
Hope this helps.
A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center