Thursday, February 26, 2015

How We're Doing

I am frequently asked how Matthew is doing.  For those who aren't aware, Matthew has multiple sclerosis, also referred to as MS.  He was officially diagnosed in 2005, although he started having symptoms as early as 2002.  So, here's what's happening:

Well, actually I'll take you back to 2008, when Matthew was finally put on a drug that actually worked:  Tysabri.  He had already tried Rebif and Avonex, both self-injections, which gave him terrible chills and cold sweats and didn't seem to do anything helpful.  In June of 2008, however, his healthcare provider introduced him to Tysabri, a once-a-month infusion.  Spending one day every month in the Portland VA wasn't great, but it was nicer than daily injections!  And the best part was, he didn't experience any side effects.  It kept his MS symptoms under control and allowed him to lead a fairly active lifestyle.

The only potentially worrisome thing about it was that there had been cases of Tysabri patients developing progressive multifocal leukoencephalopathy (PML), a potentially fatal brain disease.  However, blood tests were done every month for the first year, and every three months for the years following, so we felt safe in continuing.

Two years ago, in January of 2013, Matthew's regular blood test showed antibodies for PML.  They couldn't find any trace of the actual disease, for which we were very thankful, but the presence of antibodies was troublesome.  On the advice of his care provider, Matthew stopped the Tysabri treatments.

Things went downhill rapidly after that.

In March of 2013 Matthew was put on Copaxone, another self-injection drug.  The chills began again, and his symptoms actually seemed to be worse than the two months he'd gone without medicine.  He stopped it after only a month.

August 2013 brought another new medicine, this one fresh out of the testing stage:  Tecfidera.  This one was a twice-daily oral drug, a very new thing in the MS treatment world.  No more shots!  No more infusions!  Unlike all the self-injection drugs, Tecfidera appeared to actually control his MS symptoms, although not quite as effectively as the Tysabri had done.  Or maybe the multiple sclerosis was just getting worse?  It's hard to tell.

Whatever the case, in February of 2014 Matthew had to take a leave of absence from work.  He felt crippling pain at every moment of every day, usually listing a 6-7 on the 0-10 pain scale.  He could barely walk.  His temporary leave of absence turned into four months on short-term disability, thankfully paid for by his insurance.  He returned to work in June, not quite back to his old self, but good enough, by his estimation, to keep going.  He doesn't like to give up.

February 7 of this year, as Matthew drove his usual Saturday delivery route, his feet and legs suddenly fell asleep.  He shifted his position, moved around a bit to wake them up, but they refused to wake.

They still haven't.

He called in sick to work that Monday and Tuesday, hoping the feeling would come back to his feet.  By Wednesday, when his feet remained stubbornly asleep, he knew he would have to make the call about going on short-term disability again.

So, well, that's where we are now.  Matthew is officially on short-term disability from work, although we have yet to see a paycheck for it.  His sense of balance continues to diminish; this morning when he tried to stand up from his chair, he immediately fell back into it.  He says it feels like he's walking on stilts.

His eyes have also gone crazy, with his vision crossing and losing focus frequently in the past few days.  Yesterday he drove himself to an appointment in Salem and had to call me to pick him up, because he didn't trust his vision to get him home safely.  This morning he discovered that he has a blind spot in his left eye.  It's not always there; it's more prevalent when he's tired or stressed.  It leaves and comes back again. This means he won't be able to renew his commercial driver's license when it expires this week. Hopefully the symptoms will go away again soon! 

Matthew's energy levels are pretty much nonexistent.  In the mornings he gets up, if he can, and has breakfast with the children.  This exhausts him so much that usually he must collapse in his chair for an hour or two afterward.  He sometimes drags himself out again for lunch, if he's not too weary.  I've been making good use of the breakfast tray my mom gave me, taking food up to him when he can't manage the stairs.

Last summer Matthew put in a request to have his VA disability re-evaluated.  He is still listed at the baseline for MS.  Unfortunately, it seems that they "expect you to have all those symptoms,"so he was rejected.  We should probably file an appeal.

If you want to support us in our search to find a cure for MS, please consider joining Matthew's Walk MS team or donating to it.  We would love to have you walk with us!  And if you have any more questions about how we're doing, please feel free to ask.  We're glad to have you with us as we deal with this!