The Transition From Relapsing to Secondary Progressive MS
Approximately 85% of the people diagnosed with multiple sclerosis are initially diagnosed with the relapsing-remitting form of the disease, according to the National Multiple Sclerosis Society. In our survey, MS in America 2013, 81.9% of more than 3100 respondents report being initially diagnosed with relapsing-remitting MS (RRMS).
RRMS, a form of MS which was defined in 1995 by a panel of international MS experts, is characterized by acute attacks of new or worsening neurological symptoms, such as numbness, weakness, impaired coordination, or vision problems, followed by complete or partial resolution of symptoms. The term remission may be somewhat misleading as symptoms improve dramatically after a relapse or exacerbation, but may still be present to a lesser degree.
When most people think of “remission,” they may think that everything has gone completely back to normal, but this may not be the case. After my temporarily blinding case of optic neuritis in 2000, I recovered my eyesight in about 3 months. However, I still have residual damage from that attack to this day. I’ve just learned to live with my altered vision and don’t think much about it….unless the optic neuritis flares up again.
After each relapse I’ve experienced in the past 13 years, my baseline level of ability or function has shifted with minor residual damage and symptoms which stick around. Over time, I’ve developed a “new normal.”
During a period of time when my MS was definitely getting worse, I remember being somewhat glad to finally experience a significant relapse. Sounds crazy, but that relapse, which was really two relapses over the course of six weeks in the summer of 2009, confirmed to me that I was still in the RRMS stage of the disease. Phew. Who knew that I might be glad to have a relapse?
My fear at the time was the possibility of transitioning into secondary progressive MS (SPMS). Before that massive relapse, I hadn’t experienced one for over a year but I was definitely experiencing progression of my disease, although I had been on disease-modifying treatment since diagnosis. According to everything I had read, this pattern matched the loose definition of SPMS for which current disease-modifying drugs are less effective.
I was conflicted. Isn’t one of the goals of treatment to hopefully have no relapses, or fewer and less severe relapses? If you are not relapsing, then how do you know if you are still in the relapsing-remitting stage of the disease?
I asked my MS nurse who explained that there is no set criteria by which to determine if a person has transitioned into SPMS. The diagnosis of SPMS is made by looking back at a patient’s disease patterns over a long period of time. My MS nurse says that she will look back over the previous 24 months when SPMS is suspected.
A patient may not have had a distinct relapse during the prior 18-24 months, but measurements of disability have worsened. The patient may notice the gradual worsening or the clinician (doctor or nurse) might note it upon neurological exam. Results from each of the neurological tests performed during an office visit are documented – reflexes, strength, coordination, balance, sensation, etc.
If the MS patient sees his/her neurologist 2 or 3 times each year, then it is easier to see patterns, trends, and fluctuations in disease activity or progression. If he/she only sees the doctor once a year or less, then it is much more difficult to spot gradually worsening vs. normal ups and downs occurring on the particular day of an office visit.
During the 3rd visit the year that I didn’t have a real relapse but was getting worse, my MS nurse said to me (again), “I think we just caught you on a bad day,” to which I responded, “I think we’ve coincidentally caught 3 bad days this year then.” She looked back at her notes and confirmed that I had experienced progression as measured by the neurological exam. We discussed different treatment options which ultimately led to significant improvement in symptoms and quality of life.
When asking the question – have I transitioned to SPMS? – know that the answer isn’t an easy one. You and your doctor will need to look back over prior years to determine if you are simply just stable and maintaining your new normal, or if you are gradually progressing with or without identifiable relapses.
Researchers are beginning to look at better ways to identify the transitional period from RRMS to SPMS as early as possible with the goal of optimizing treatment, if progressive disease needs to be approached differently than relapsing disease.