What about Secondary-Progessive MS?

Is anyone paying attention to SPMS? It seems like an orphan disease. I diagnosed it. Honest. My physician said “I guess you’re right.” I know MS is hard to diagnose, but isn’t it the physician’s job to do that?

The trajectory of my MS began with double vision (dx optic neuritis) in 1990, thus “possible MS.” Time passed, and I forgot about it. Seizures led to my MS diagnosis, in 2010. Did I have a 20-year remission? In retrospect, I see a definite, but gradual progression of gait and balance problems, numerous falls for no obvious reason, numb feet. “You’re kind of limp-y.” “You know how clumsy you are.” Such good support from friends and loved ones (I love them anyway!).

Since 2010, balance and gait problems have worsened. I use a cane. When I’m barefoot, it feels like I have shoes on. In hot weather, I crash. There have been no identifiable remissions since 2010, hence my self-diagnosis. I declined Copraxone, which my physician suggested, because I couldn’t identify the problem it was supposed to solve for me. I thought there was more evidence for progression than for relapsing. The problem for me is that no one seems to know much about SPMS. Why? What resources are available for SPMSers?

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Comments

View Comments (6)
  • Deborah60
    5 years ago

    I had one medically discernible exacerbation at 52, which caused significant impairment: non-spinning vertigo, half body numbness, gait issues, limb weakness, parathesia and paralyzing fatigue. Coupled with a family history of MS, it was the probable diagnosis even though I had an atypical lesion shown on the MRI. The lumbar puncture confirmed the diagnosis, along with the neurological changes which remained after two years. I now realize that I have had relatively “silent” attacks since I was 18 years old, but the fatigue after them has increased exponentially as I aged. I too have wondered if I have SPMS, because of the “silent” nature of my disease, but I have found that after going on Rebif a year ago, my brain fog reduced immensely. If I am not dealing with a virus, infection or terrible stresses, I manage better now than I did two years ago. I am worse, in stamina, than eight years ago, but it is a mystery to me as to when to give up on any treatment. Nothing is clear cut with this disease, I believe. Doctors follow our lead because we live with the symptoms, and if the clinical evidence supports it, whatever type of MS we are dealing with is what will be acknowledged.

  • Singalot
    5 years ago

    I have SPMS, have had for several years. I wasn’t diagnosed until 1999, before that I had years of symptoms that after the diagnosis made such sense. But being young no one seemed to listen to me, which in my opinion is why I went from diagnosis to SPMS in such a short time. After 2 or 3 years of diagnosis, my neuro told me I had SPMS and explained it to me. He said that RRMS you have periods of normalcy or near normalcy in between flares, with PPMS you go straight downhill, but with SPMS you are going straight downhill, but you have small periods of rest that are very short lived but you have gradual debilitation going on all the time, with just sparse recoup time in between. Does this help any?

  • Lamm
    5 years ago

    Finally got in here to comment, my MS is the same as you all speak of. My doctors just said you have MS without telling me what type, I really don’t think any of them really know. I am 52 and have been having symptoms since my 20’s. I was told you have cronic fatigue syndrome etc. I take aubagio right now not sure it’s helping or not, my whole right side of my body is numb and painful from my head to my toes and it never changes. very unsettling, I some how learned to walk straight again, I staggered around like a drunk for two years but with a very determined mind I did it. still have trouble with other issues buttons, writing, everyday things. I meditate everyday on these issues it helps didn’t think anything would, never was a person that meditated. Just my story thought I would share.

  • oldtimer56
    5 years ago

    Watch my beloved wife go from a full of life woman to a bedridden shell who depends on me for everything. She gave up a long time ago when she lost her ability to speak and write. Surviving is what we do and pray for a end to this nightmare.

  • PegLeg
    5 years ago

    I have been secondary progressive, for at least 10 years or so, and I feel we secondary people, are the forgotten ones,,nothing out there for us,, that’s MHO..

  • Ms Marple author
    5 years ago

    It’s so discouraging to see a new drug announced, and it’s always for relapsing-remitting MS. Physical therapy is essential and continues to make my life better than it would be without it, but that’s about all there is. My doc sees me once a year. An MRI. Yep, you still have MS. See you next year.

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