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.
View References
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

View Comments (17)
  • Lindsay
    1 month 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
    3 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.

  • ShelbyComito moderator
    3 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
    3 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

  • ShelbyComito moderator
    3 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
    4 months 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
    1 month ago

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

  • SchumannS
    4 months 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.

  • ShelbyComito moderator
    4 months 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
    5 months ago

    L

  • maryconransmith
    5 months ago

    I want to make sure my post went thru.

  • Mojosmom
    6 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
    6 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
    3 months 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.

  • jbain510
    6 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
    6 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
    6 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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