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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.

Lisa Emrich | Follow me on Facebook |Follow me on Twitter | Follow me on Pinterest

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • SueK
    3 months ago

    I had been RRMS for over ten years. We had moved out to SoCal and thanks to the beautiful weather and sunshine I had become active, walking 5 miles a day, losing thirty pounds and was in the best shape of my life. My new doctor had put me on Tysabri. No flair ups, no progression, stable MRIs for once, and best of all, I felt great! After two and a half years though, she suggested I go on a Tysabri vacation, as was common practice back then. In place of it she put me on high dose steroids. Everything began going into a downward spiral. Looking back I now realize diabetes began setting in, in spite of healthy eating. I was tired and weak, no longer able to walk a far and fast as I had been. After a horrific night when a neighbor’s dog attacked our pups and me, causing me to fall catching my hip on an electrical box, I was in constant pain, having cracked the bone and injured my lower back.

    I noticed my visits to the bathroom increased in frequency and I began loosing control of my bladder. My cognitive abilities took a rapid nose dive. I became deeply depressed after years of stability in mood. My balance was off leading to frequent falls. Never had my symptoms been so awful, yet my MRIs told a far more positive story. I began developing fatty liver syndrome, (non alcohol related). My triglycerides skyrocked as did my cholesterol. Both had been normal the year before. My doctor noted my neurological exam was off and put me right back on Tysabri, but this time round it no longer had the same boost I had during the initial course.

    We moved back East and I asked my new doctor what was happening. It was simple. From all appearances and review of my history since CA, I had entered the world of SPMS. While I tried to figure out where this was going to take me, how far would I deteriorate and how quickly this would happen, my husband went through his own changes. From a loving supportive husband he became distant, annoyed with me for not trying harder, claiming this whole “SPMS” was just an excuse to give up, gain weight, quit being active, etc… I guess it had nothing to do with the facts that my symptoms were indeed worsening. My JCV titres has risen to a risky level and I was pulled off Tysabri. To complicate matters, my doctor vanished for all practical purposes as well. With no way to reach him, no replacement treatments, my condition progressed for the worse. I changed doctors again. She was disgusted and alarmed at my former doctor’s neglect. He put my health into great risk, developing an inflammatory response known as IRIS caused by stopping a Tysabri cold turkey without putting me on something else. Still, my husband’s main concerned seemed to be when I could return to hiking 5 miles a day and losing weight gained thanks to steroids.

    Since then I began and completed treatment with Lemtrada. Between knocking out my immune system and it being more stubborn than anticipated at reconstituting as should be, I have be almost bed ridden. Still I hear day in and out, “If only you got outside and started walking again you would be back to normal. I feel as though I am stuck in Purgatory. This is not the heaven I once knew. I am not dead, so I am stuck living, feeling, hurting while being emotionally abused by the same living family that once had my back. And to think… my husband is a Medical Research Scientist. He should know better. But I guess this is no longer a medical issue between us. So… I sit and stare at the same four walks every day. I cannot drive, have no friends and family has more or less set me aside while living out their lives. Sorry if I sound cranky, but this sucks.

  • fremkiewicz
    6 months ago

    I just found this article, so I appear to be 6 years late in coming to the party. My wife has just been diagnosed with secondary progressive after spending from 1994 thru 2018 asvrelapsing remitting. In 1987 she first felt the impact of MS but was not diagnosed until 1994. In 1994 the neurologist told us that we would be able to know where the disease was going by looking at where the disease has been. As I read the article the diagnosis from RRMS to SPMS is as evasive as the first time diagnosis. I find this approach to diagnosis and treatment a little like “closing the barn door after the horses have escaped.” If I am this frustrated with this approach to the disease I can only imagine what goes on in my wife’s head.

  • Mandyrose
    6 years ago

    I’ve read these comments and have noticed more and more of us have lost confidence in the ability of the DMDs to prevent flares or worsening of our progression. I was diagnosed with RRMS in 1997 and was able to continue working for five yrs. The main problems I had were related to side effects from Avonex. My liver enzymes were highly elevated (3xs normal). I was “upgraded” to SPMS two yrs ago. I am not on any drug therapy. The last was Tysabri( two yrs). It was convenient and had few side effects. My doctor took me off for fear of PML. I went the suggested route of DMDs, but now eat well and try to take care of myself. I won’t take a drug for RRMS just to be “on something”. Unless we are on a drug, we get “followed”, which doesn’t mean much to me. I realize how little is truly known about MS. It seems it’s hit or miss. Good luck to everyone in coping with this unpredictable disease.

  • Lisa Emrich moderator author
    6 years ago

    Hi Mandyrose,

    Good observation. It is tricky to maintain faith in something which doesn’t have a concrete positive or negative effect on our disease. We can’t compare how we’d be with or without treatment over time since we can’t clone ourselves for such a trial.

    No matter what, taking care of ourselves should be a very high priority. That can have as great a positive effect as anything for many people, regardless of what stage one’s disease is at.

    I wish you well,
    Lisa

  • helene
    6 years ago

    I was diagnosed just over two years ago. I started having difficulty walking about a year before that. I have never had anything that I would consider an “episode” and my symptoms have gotten progressively worse over that time. Common sense tells me that I am already in the progressive stage. However, my neurologist diagnosed me as having RRMS. When I asked her why, she responded that that’s what she has to write so I can qualify to get the DMDs. I don’t like meds and have refused them to this point. Why risk horrible side effects to put something in my body that is unlikely to help anyways. I wonder if there are others that fall into this category? (as a side note I am currently searching for a new neuro . . . anyone know of one in the SF Bay Area?)

  • johnwebbjr
    6 years ago

    Helene,

    I thought the same thing. I was diagnosed in 2001 and none of the drugs back then were effective; worse, there really was no way to tell if the drugs were doing any good. I wouldn’t even go to the doctor because they weren’t helping me either. But last March I could tell I was on the downhill slide and went to the neuro. Tysabri was out because I had been exposed to the JC virus but he put me on the new pill Tecfidera. Still expensive as hell but it seems to have really helped. I don’t know if the interferon drugs would have done me any good but if I knew then what I know now, I would have tried them all.

  • Lisa Emrich moderator author
    6 years ago

    Hi Helene,

    Oftentimes I do think that we instinctively know things about own bodies. However, I also believe that sometimes trying a treatment is worth the risk. Like I just mentioned above to Kim, it was after I switched therapies that my MS started to improve again. What seems like progression may not always be permanent.

    If you are looking for an MS Center in the SF Bay Area, you might try searching the Consortium of MS Centers for a doctor in your area (http://www.mscare.org/search/custom.asp?id=881). You could also try contacting the National MS Society to get a list of neurologists in your area. They should have a listing of who specializes in MS.

    Good luck,
    Lisa

  • Kim Dolce moderator
    6 years ago

    Thanks for the clarification, Lisa, I’ve had similar concerns. I would think that neuro and patient might be reluctant to officially change the dx to SPMS because it would disqualify the patient from being approved for RRMS disease-modifying therapies. Considering that there could still be an inflammatory component during that transition, DMDs might be helpful for a while. Such a complex disease.

    Kim

  • Lisa Emrich moderator author
    6 years ago

    Kim, you know what is interesting to me in looking back? I was concerned that I was quietly beginning the transition into SPMS at one point. But after changing treatment therapies, and actually improving, I can see that I’m still very much RRMS. Very complicated disease and one which doesn’t have a good one-size-fits-all solution. I just hope that people aren’t afraid to have these tough discussions with their doctors. Everybody in the field is still learning more and more.
    Lisa

  • JB
    6 years ago

    To me this is ridiculous. Why become depressed worrying about “stages”?
    These “stages” are artificially created by doctors who still know little about this disease or diseases and have no really proven treatment without possibly debilitating side effects to halt it especially as it worsens. Lead as healthy and active a life as you can and try to surround yourself with positive people.

  • Lisa Emrich moderator author
    6 years ago

    JB,

    I agree to some extent that the stages are not clear cut. That is why over two decades ago, experts in the MS medical community came together to try to develop a common language in discussing and diagnosing MS. They looked at patterns of disease and then categorized them as best they could. As researchers have learned more about the disease, there are already new sub-categorizes which are used in clinical trials.

    Regardless of what forms of MS someone has, I agree that we should each try to live the best life possible. Not fret about labels and do what is best for our own bodies and situations. Surrounding yourself with positive people is a good start.

    Be well,
    Lisa

  • Judy P.
    6 years ago

    I was diagnosed 13yrs.ago at my 6mo.checkup in Jan. my neuro said I’ve progressed to SPMS. After an extream injection site reaction over a yr. ago I’ve been off all meds.,my neuro is not happy,but understands my feelings.
    I’ve gone from nothing,to a cane,to a walker,to a rolling walker,to a wheelchair.All my symptoms have progressed w/out an exaserbation,I won’t tire you w/ my “unhappy” list of symptons. I just have to deal as I progress w/ this MonSter. Judy.

  • Lisa Emrich moderator author
    6 years ago

    Judy, Thank you for sharing your experience. It is helpful to know what the progression is like for others. We do just have to keep dealing with life as it changes. Adaptation is key.
    Lisa

  • Josh
    6 years ago

    The transition from RRMS to SPMS is one that has bothered me a lot lately. Thnk you for this article. It has given me a new set of question types to ask my doctor at my mnext visit.

  • Lisa Emrich moderator author
    6 years ago

    You’re very welcome, Josh. Many people with MS have questions about SPMS at one time or another. I hope that you are able to start a conversation with your neurologist and learn more about your own situation.
    Be well,
    Lisa

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