The Clip-Date

I always worry that I'm posting too much, taking up too much of your time.  It's been two months, though, since the last post; I guess that's not too shabby.   First, the latest news with some praises sprinkled in... Andy's lumbar MRI showed nerve root disease, as the doctor suspected.  That explains both the pain and the loss of strength and reflex in his knee.  Praise:    Neuro PT is helping tremendously!  He is now walking close to his baseline and has regained some of his strength and reflex.  He will continue with PT, as opposed to surgical intervention, and is hopeful that the nerves will continue to heal with time and therapy.   Praise:    The knee MRI showed no independent damage from the falls; all of the problems stem from the lumbar problem.  Hooray for no new issues!   Andy's annual bone density scan showed a small amount of further loss; that was a bit of a bummer as he was hoping for improvemen...

If you recall from the last post, Andy was having some crazy nerve pain and was unable to walk unaided.  He used the walker for just over a week, followed that with a cane for a week or so, and then started limping around on his own.  He has fallen four times since this began in December, his left knee feels very unstable, and he's lost all reflex in that leg.  Not exactly how he'd planned on starting the year.   We saw the UCSD neurologist ( aka the Big Boss ) last week and he thinks that this issue is unlikely disease related, but rather nerve root disease.  He has ordered a lumbar MRI, which is scheduled for February 4. Andy has been evaluated for PT with a neuro physical therapist.  They are assessing his fall risk and hope to help him with his balance and teach him how to better compensate for his disease related issues as well as handle the new issues with his spine and knee.  He was very encouraged after his initial visit and is looking for...

Three months!  It's been three months since there's been news!  How fantastic! Pardon the excitement, but compared the early days when it seems like things were changing minute by minute, three months feels like an eternity!  Since it has been a while, I do have a number of things to address.; you may want to grab a snack right quick... The Good  Andy has remained stable for the last three months!  That's huge!  A few of his symptoms have been a bit more bothersome lately so he's keeping an eye on them, but overall, he is doing well. This morning, he had a repeat set of MRIs and we just word that things look good!  He still has one lesion on his brain, but it is clinically stable when compared to the last scan.  His spine remains lesion-free.  Such an answer to prayer! The Bad We spent some time at Urgent Care and then the ER over the weekend as Andy developed sudden and debilitating pain in his back, hip, and left leg.  Our first concer...

It's been a minute, so I thought I'd post the latest... That crazy heat-wave that we just had?  Yep, it caused Andy's symptoms to flare.  We used our little, portable A/C unit and that made a big difference for him; he quickly returned to his baseline.  A huge shout out to our friends who gave it to us! The trip to Munich was a success.  He had a little mishap with one of his medications and he did catch a good cold, but he slept most of the weekend when he returned and then started to feel normal again.  The timing was perfect; the return of the B-cells likely aided him in fighting off the cold.  Yay for the little things. The infusion on 9/7 went well, with only the expected side effects ( fatigue and itching ).  While they are annoying, it's so much better than some of the other ones, so we'll take it.  By now he should be B-cell free again. As always, we continue to pray for his fatigue and that he'd have the energy that the needs.  It se...

I haven't posted for almost two months, and that's a good thing!  Time lapses typically mean stability and for that, we are ever thankful.  As expected, the heat has indeed caused a few flares for Andy over the summer, but they've been manageable.    The latest labs show that Andy's body is finally producing B-cells again, so it is time to suppress his system.  They've scheduled his next infusion for September 7.  We expect that it will go well, as it did last year.  The biggest side effect ( so far ) is that he gets crazy tired afterward; last time he slept for almost two full days following the infusion.  Still, that's a small price to pay for a drug that works! Just two prayer requests this time... On the 14th, he will be traveling to Munich ( for work ).  This is kind of a last-minute trip so he's been working a million hours trying to prepare.  Please pray that all goes well and that he remains healthy.  He's specifically conce...

Andy has now been off of steroids for five weeks and thankfully, we haven't seen any significant uptick in his symptoms.  As if that wasn't enough good news, last week he had repeat MRIs of his brain and c-spine; there is no sign of active inflammation and his lesions have remained clinically stable.  We're starting to think that the Rituxan is indeed going to be the thing that really helps him.  It's actually hard to believe that we've gotten here, it's been such a long slog since all of this began.   For now, we are to continue to monitor his symptoms and let his team know if anything changes.  They will recheck his B-cells in July and let that guide them as to when to go ahead with the next infusion.   Here are today's prayer needs... Pray, as always, for his fatigue.  It seems like it is here to stay, and at times it makes keeping up with everything difficult. Pray that he is able to stay off of the steroids.  Self-explanatory...they...