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Here’s My Transition to Secondary-Progressive Multiple Sclerosis

Here’s My Transition to Secondary-Progressive Multiple Sclerosis

I’m a patient with secondary-progressive multiple sclerosis (SPMS). I’m 37 and was originally diagnosed at the ripe age of 25 years old with the common relapsing remitting (RRMS) variation of multiple sclerosis. I’m here to talk a little about both this emotional and very physical process through my eyes.

You can very easily Google the difference between the two stages. I also have done that as well. In fact, I plan on sharing some of that information, but I also want to put a personal spin on it.

Nine years of RRMS

According to the MS Society, of the 85% of people initially diagnosed with RRMS, approximately half will transition to SPMS within 10 years, and 90% will transition within 25 years. This was exactly what happened to me except I was granted 9 years of RRMS. I had the typical fatigue, optic neuritis, heat sensitivity, dizziness and a few cognitive problems. I remember distinctly proclaiming, “Yes, I have MS, but it’s never stopped me from doing anything I want to do!” I had no problems walking. It was tricky sometimes, but I could still assimilate and function productively among my able-bodied counterparts.

Boy, have things changed

Mainly I could still work a forty-hour work week. I could drive and live independently. I remember walking without any assistive device. I think the moment I experienced a drastic decline in my baseline of independently walking and working, I reluctantly entered the territory of SPMS. I must stress here, this was not a smooth linear process, and I felt like I was losing my grip on life. For a while, I wavered between the two diagnoses, which I now know is pretty typical. The experience of my husband purchasing my first cane was so frightening for me that I had to wait outside in the car! I just requested something cute. Years later, in order to get my first wheelchair, he had to give me piggyback ride into the store! I was and likely still am stubborn to the core.

Steroid infusions

Again according to the MS Society, once this transition occurs, a person will gradually experience fewer relapses (also called attacks or exacerbations), and possibly none at all.1 In those people who continue to experience relapses, this disease course is considered relapsing as well as progressive. During this time, I requested as many steroid infusions as possible. They made me feel better, but little did I know they would bring me closer to a diagnosis of osteoporosis, too. In turn, I soon stopped that treatment.

“SPMS is primarily considered a progressive disease course because it marks the transition from the inflammatory process that occurs in relapsing-remitting MS to a process characterized by gradual destruction and loss of nerve fibers.”2 I read the words but was not ready for the absolute reality.

I had to reinvent myself

In order to keep moving forward, I had to reinvent myself. I needed to make sure that I still felt purposeful. I did that by exercising the things that I could still do. For instance, right now I’m using dictation software in order to write this article. I attend monthly meetings to help me gather my thoughts around multiple sclerosis and its impact on my life.

Nobody prepared me, but still here I am. I hope this smoothes your ‘possible’ transition.

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.

1. http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/exacerbations/index.aspx 2. http://www.nationalmssociety.org/about-multiple-sclerosis/relapsing-ms/relapsing-remitting-ms-rrms/index.aspx

Comments

  • Toledo34287
    5 months ago

    I’ve had SPMS a little over a year. My MS was diagnosed fairly late and I refused to admit anything was wrong. Continued up that ladder, living life. Until I ended up in the hospital for the first time EVER and some uncaring jerk doc comes in at 5:30am while I’m still groggy an tells me I’ve got MS. Having never heard the words before I didn’t even have any questions as he described how downhill my life would become.

    Lucky for me I’m type A and I ignored him and got on with life, albeit different then before.

    I’ve had a real hard time with my MS and it progressed fast. I’ve been diagnosed with secondary progressive for about a year. I’m on Ocrevus which works well.

    My beef right now is doctors. They assume to know what MS is and they make light of their ignorance. as a result I’m not getting the attention and respect for my illness that I think I deserve. I’m constantly in pain. I isolate to the point I’m afraid to go out of the house.

    You’re article brought tears to my eyes, but then a whoraa and arm pump. keep writing, we need to hear your story

  • Bodega
    5 months ago

    My heart hurts to hear of a person as young as you are with SPMS. I hurt when I hear of any age person with MS. What a road we must go on of aggravation, sorrow and then finally acceptance and ultimately periods of joy mixed with aggravation, sometimes anger and mostly frustration and a real acceptance and tolerance for almost any degree of pain.
    It is acceptance that is so hard. I am still working on that as I hear myself saying, “Surely this can’t be like this all the time, can it?” Now I know there is little easy relief and it takes incredible ingenuity to figure out how to do things that used to be so easy we just “did them” without a thought.
    What I am doing is finding ways of doing things that make me happy, sometimes joyous while understanding I must still do the things I DO NOT like doing anyway. There is no way around that.
    I paint with acrylics now (not oils) and rarely carve anything though Dremel tools do help. My paintings are one of a kind and often draw on ideas I think are very, very funny. Having fun while painting and creating the strange faces and tortured fantasies amuses me constantly. At this time, I have two unfinished pieces. My goal is to finish those knowing full well I cannot carve very well anymore. The RA I have is a strange bedfellow for the MS…it is a relationship fraught with confusion and pain and frustration. I wonder how I was able to ignore the RRMS I had for so long. It was all about time…I had plenty of time between RR of MS and only minor pain problems with arthritis in any period of time
    I think I am at the point now where this new face of that old disease is not affecting me so much. Again, it is a process of slogging through the tough parts until the joy surfaces once more.
    I am Buddhist and use meditation to facilitate meditation directing me toward, calmness, clarity and resolution.
    I hope you all find your solution and if you do I hope you share with us.

  • potter
    5 months ago

    I had a aunt who was SPMS that used a walker to get around. A friend gave her a gift certificate for a private trainer she thought was the greatest. The trainer worked with her and she was able to give up the walker and just use a cane. She was 73 years old. Potter

  • stephsanchez07
    5 months ago

    I enjoyed this article. I was dx’ed 5 years ago with RRMS. All of my MRI’s have showed no progression or no active lesions. I haven’t had a relapse that I know of. I do have the cognitive issues and balance issues. The urinary issues are a problem but I am on a medication for that. I wasn’t making it to the restroom but now sometimes I sit and nothing comes out even though I have the urge. My cousin was dx’ed 5 months after I was as well. We are both on Tecfidera and see the same MS neurologist.

    I know that there are things coming down the pipe for both of us but we will get through this as always. You will too. Stay strong MS warrior. We are behind you!

  • Kera
    5 months ago

    I started having symptoms in 2007 but wasn’t diagnosed until 2014. By that point I had to go on permanent disability because of my symptoms such as severe memory loss, incontinence, severe muscle spasms in my arms and legs, issues walking and many more. In 2018 after my symptoms continued to worsen but no new active lesions my MS neurologist started monitoring me more closely for the next 12mo which resulted in my diagnosis to change to SPMS.
    I started Ocverous end of 2018 but my symptoms keep getting worst. I already use a walker for several years but now the length I can walk is much shorter and I get exhausted so much easier and for longer periods. Some days I just sleep all day due to fatigue. The pain from the muscle cramps is sometimes unbearable and I have to go to the hospital.
    I hate this stage so much

  • dedeye
    7 months ago

    I was diagnosed in 2010 with RRMS. Within 2 years I transitioned to SPMS. I know now that I have had it a very long time. Doctors believe my particular case was held at bay due to years of steroid use for asthma.

    In 2009 everything came crashing down on me. It was recommended to me I start Tysabri but I was afraid of it. But after a year on Copaxone I was getting worse. Tysabri has saved me that’s for sure.

    Came in 2013, and now a walker. I am still a badass though and will fight on!

    Good article

  • WinterSnow01
    8 months ago

    My transition was slow…started at age 52 although I didn’t realize what it was. My legs were going wonky…and I’ve also had MS since age 17.

  • stephsanchez07
    5 months ago

    Wow! That’s young to contract MS. Continue to fight the fight.

  • Moshe
    8 months ago

    God bless you! Yes the transition to SPMS IS HARD! Working with it is very hard. I am retired and have a service dog which makes it easier. we

  • Renea
    8 months ago

    I was diagnosed in 2004. Seems you and I have a similar story. I stayed RRMS until Dec 2017. I had a 25 lesion relapse. I have been in and out of the hospital 3 times in a year and spent close to 3 months in the hospital over the course of that time. All my Neurologist has said is “we don’t know why you went progressive” but hasn’t exactly given me a new diagnosis. I am considering switching Neurologist. I have been on Ocrevus since April of last year and have been in one constant relapse. Countless MRI’s always having active lesions.

  • SueK
    8 months ago

    I don’t know when I transitioned into SPMS. All I know is my relapses stopped. My MRIs looked good, but I felt like hell. Occasional bladder leakage gave way to no control what so ever. Steroids left me with osteoarthritis and diabetes. I went from hiking five miles a day to struggling to go up one flight of stairs. I knew this day would come, so I accepted it. At least far more easily than turning age 60! MS going to progress to one degree or another, like it or not. Aging cannot be stopped. We have to accept, adjust, adapt, albeit begrudgingly.

  • Lindsay
    10 months ago

    This article, leaves me with several questions. One being- was your transition to SPMS indicated on your MRI? How did your doctor determine when you transitioned to SPMS from RRMS? I know a little about this, I just wondered how it worked it your case bc we are all so different.
    I never seemed to have remissions which confused me. Was the lack of remissions the biggest indication?
    I hope I don’t sound cold bc I don’t mean to be at all. That was a difficult time I would imagine and I am sorry. I wish you had realized that in most cases, your insurance would cover a cane and a wheelchair with a prescription, not unlike one for a medication. My wheelchair was covered 100% by insurance; I used a cane as long as I could and bought that bc I needed it ASAP.
    MS is such a varied disease that I don’t know how a person knows that they are in the SPMS or if they possibly have another condition altogether. I remember thinking boy my MS is doing some strange things. I didn’t mention some symptoms I was having for a long time to my doc, who is an excellent MS specialist, out of wrongly assuming they were MS. I have another condition, that, in the begging especially, presents very much like MS and is rare. As the “unusual symptoms” progressed I could tell it wasn’t the MS. After testing and more testing we discovered other diseases altogether in addition to MS. I def. have MS still, I just have some other things. It would have been easy for me and/or my doc to assume it was progression of MS had we not realized that we can have MS and other diseases that may be similar with very similar symptoms but in need of very different treatments. This is only my experience, not necessary the case for everyone, yet something worth considering in my opinion.

  • MargieF50
    12 months ago

    I started. RRMS at about age 17 – finally diagnosed by MRI at age 37. I am now 68 and just been transitioning to SPMS, getting my first steroid infusion right now. It seems a big change to me, isolating in the extreme! But compared to many others, I’ve had a good run and shouldn’t complain!
    Thank you for explaining the process.

  • Shelby Comito moderator
    12 months ago

    Thank you for commenting, @margief50. I can imagine that must be a very hard transition, and I’m so sorry to hear it feels isolating. Although I know an online community can only be there for you in so many ways, please know that you are not alone! We are thinking of you and would love for you to keep us posted on how you’re doing. Best, Shelby, MultipleSclerosis.net Team Member

  • kathiem
    12 months ago

    I was very fortunate to have 15yrs post dx with RRMS and only two relapses in that time. However, since moving to sn SPMS dx in 2016 I have rapidly lost function. I am now incontinent of urine and have to use a wheelchair outside. I struggle in all four limbs with most tasks. I was not expecting such rapid decline. It’s been very very hard. I know I should be grateful for the good years and I am but I still find I’m very down about where I am now. On the plus side, cognitively I’m pretty good and have been able to stay in my job for 15hrs a week. Wonderful employers. Really not sure how much longer that is possible but while I can I will

  • Shelby Comito moderator
    12 months ago

    Thank you so much for taking the time to share a little bit of your story with us, @kathiem. I can’t even imagine how hard this experience must be for you. I am so glad to hear your cognition has been pretty stable and that you have such understanding employers. We’re thinking of you and we’d love for you to continue to keep us posted on how you’re doing. Thanks for being a part of our community! Best, Shelby, MultipleSclerosis.net Team Member

  • ASAPcindy
    1 year ago

    I’ve had ms for 25 years now, and I’m not sure when I flipped, but my last official diagnosis was SPMS with a relapsing component. It was because I had lesions that became un inflamed after Tysabri. I did well on that drug. I’ve used a walker for years and stopped driving about five years ago, so maybe I had my head in the sand as to what was really going on, but to be perfectly honest it didn’t matter what was the official title of my disease. I figured I had ms and over time I would experience gains and losses, and then more losses than gains, and over time I was right. That’s the way it went. I remember talking to my old neuro about what the ‘title’ meant. The reason I say my old neuro as he passed from cancer at the age of 45. I’ve lost a PT I like to cancer as well. I guess the moral of the story is their are worse things than SPMS.

  • Lindsay
    10 months ago

    I can attest to that. Especially when you them and MS.

  • SchumannS
    1 year ago

    It has been about 2 years ago that I started to gradgually ge worse. I went from walking to needing a cane then a walker which I still use for short distances but need wheelchair for longer distance. The SPMS is not what I was looking forward too but guess I’m lucky to an extent as I was diagnosed in 82 and had very few attacks.

  • Shelby Comito moderator
    1 year ago

    Thanks for sharing @schumanns! I’m so sorry to hear that the last two years have been tough. Your positive perspective in the midst of it is truly inspiring. Thank you for reaching out to the community – please continue to do so anytime! We are here for you. Warmest wishes, Shelby (MultipleSclerosis.net Team Member)

  • maryconransmith
    1 year ago

    L

  • maryconransmith
    1 year ago

    I want to make sure my post went thru.

  • Mojosmom
    7 years ago

    ditto, a thousand times!!! transition was (and remains) easy. acceptance? not so much. you go, us (ALL of us)!!! MS will not win! PS, dontcha LOVE speech recognition software? for those who don’t know, Microsoft started including it, free of charge, in their Office software in 2003. for more info, http://office.microsoft.com/en-us/word-help/about-speech-recognition-HP003084099.aspx

  • ph82
    7 years ago

    Thanks for sharing. I can relate I been diagnosed with SPMS also. I use a cane. My walking is getting worst. I don’t want to but I think a walker is next. I’m going to therapy now to try to strenghten my legs especially my left. I’m worried I won’t be able to get out by myself soon. Does anyone got some excerises for leg strenghtening and tone.

  • bstraiton
    1 year ago

    Do you do physical therapy? It has done wonders for me. My pt is quite amazing. At first I was referred to her from my urologist to strengthen my pelvic floor muscles. That is her speciality. But after some time I became pregnant so it became more about preparing my body to give birth and keep me active. Of course my MS basically disappeared while I was preggo so it was more massage therapy. After I gave birth I didn’t go back. I suffered a major relapse combined with post partum depression. That entire year was on auto pilot. Make sure baby is ok, fed, changed, bathed and has play time. It was all I could do. No time for me to take care of myself. By her 1st bday I was coming out of my funk only to be thrown down harder when my medical assistance was cancelled. I went w/o for 5 mo. Messed my body up terribly and my brain even worse. I’m now back seeing the same physical therapist I was before and she’s still amazing. We dove right back into my MS care even tho my orders are for knee and ankle issues brought on by arthritis and core weakness from carrying a baby. After 6 weeks she has me doing some great neuro-static stretches and working up my inner thigh and hip muscles. Even after going thro rebound disease which I’m still dealing with, she’s greatly improved my ability to walk and do stairs in just 6 weeks. It’s a great tool for battling the havoc MS causes our bodies to go thro.

  • asapcynthia
    5 months ago

    You know you are the only other person besides myself who has gone through pelvic floor PT. My was to relieve my right side pelvic floor spasticity. It’s very strange when half your crotch seems to have shrunk in the shower. But, knock on wood, it helped. A lot.

  • jbain510
    7 years ago

    When I asked “what sort of MS do you have?” on questionnaires, I have gone to “Do not know,” because I don’t want to admit to SPMS.
    Thanks for the article. I think I can now “fuss-up” to SPMS. It won’t hurt quite so much.

  • Ms Maggie
    7 years ago

    I also enjoyed your article and appreciate your sharing the experience. So little is talked about SPMS almost as if it was a dark scary dragon waiting to consume us. I am in the RRMS/SPMS transition point also. I still get relapses, but find that my ability to function has diminished with out obvious relapse. The unknown is always a bit scary, but it helps when folks who have come before are willing to share as you did. Thank you.

  • Sandy McIntire
    7 years ago

    Thank you for your article. I think I am transitioning into SPMS and based on what you have written, it makes it clearer. I see mu neuro next week and am afraid that is what she’s going to tell me. It helps to know I am not alone and that it is possible to still be productive, not matter what.

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