I have Secondary Progressive MS which means, according to the NMSS, a
transition occurs from the more inflammatory disease process seen in Remitting Relapsing
MS to a more steadily progressive phase of the disease characterized by greater
nerve damage or loss. During this phase, relapses become less frequent - or stop
happening altogether — and people experience gradual changes in function, with
or without some periods of stability along the way.
When I was diagnosed
with MS in 2011, I believe I was already on the way to having SPMS. If I had
received a correct diagnosis in the early 2000’s, I think those would have been
considered my RRMS years. Who is to say
that a DMT (disease modifying treatment) or DMD (disease modifying drug) taken years
earlier would have staved off my disability or not? I often wonder. “What if?”
After I broke my ankle in 2010 – which put me on the road to my 2011 diagnosis
- my mobility continued to decline. I went from a cane to forearm crutches to a
scooter to a power wheelchair within a matter of less than five years.
There is no treatment
for SPMS, I take medications to control my symptoms and a variety of vitamins
and supplements. Since there are so many drugs for RRMS however, the medical
field has become more interested in developing treatments for progressive MS. Some
have been met with success.
With SPMS, I feel things are not as easy as they
used to be. I have become resigned
to the fact that my current state of disability will probably not be reversed, I
probably won’t walk again. I am slower. I am weaker. I need more help. I am more easily
fatigued and need more time to complete the tasks that I would have found easy
in the past.
Now that I am reading this, I realize it sounds like a bit of a downer. SPMS
isn’t puppies and rainbows but I am finding ways to cope with these changes,
including support resources and finding ways to make work and day-to-day
activities easier on me.
I am also encouraged by research that is leading to possible treatments
for progressive MS on the horizon, including remyelinating agents like Anti-lingo and a dozen other
promising
therapies. I wonder what the future holds for MS.
