Atypical Multiple Sclerosis

So, today I thought I would give a quick( if you’ve read my posts you know quick isn’t really in my vocabulary. I tend to go on and on) update regarding my baclofen pump.  I’ve had my pump now for 1 year and 9 months.  YIPEE!  It still works great and I am still loving it.

Yes, I still feel spasms sometimes.  But they are weaker than before the pump.  Everything has to be judged according to a before time.  For instance in my family we refer the time before ms as “PMS” -preMS.  Yes, I am aware of the typical meaning behind PMS.  But really it works here too because since having MS I feel bloated and irritable. And the time after MS as well “AMS”.  That works to because well I ams filled with MS.  Okay, bad joke but it is important.

SO, I feel spasms but not to the extent I did Pre-pump.  When they get bad or the stiffness in the legs return we (docs and I ) crank it up the pump.  For me, it really is the best thing since sliced bread.  If for nothing else than for some relief from the cloudy, drunken, exhausting side-effects of Baclofen Pills taken orally.

I have had some interesting incidents along the way.  The MRIs are always interesting. My visits to the MRI centers are always a crap shoot.  Some of the personnel at the center are leery, afraid, hesitant to perform the tests.  They must be afraid something bad will happen to the pump.  Apparently, you have 24 hours to get the pump checked after and MRI. Well, at the center I go they are unwilling to perform the MRI unless I have an appointment to get my pump checked within 4 hours.  This becomes a bit of a drag when the MS Docs are telling me one thing and the MRI center is telling me another.  I mean really!  I have enough on plate to deal with, they can’t find common ground or at least a common time frame.

Ok, so once I had a problem during an MRI.  My pump felt very hot, it was moving and fluttering.  That was a very weird and strange feeling.  The technician immediately stopped the test, got the MRI doc and he ended the MRI that day.  The technician looked frightened, she couldn’t escort me out of the building fast enough.  But that was only once AND I had both brain and spinal MRI. I must have been in the tunnel for close to 90 minutes.  Later, I found out that it isn’t so much where they scan as it is the time in the tunnel that affects the pump.  Good stuff to know.  Split up the MRI scans even it means two visits.  The technicians will be happy and so will you.

Secondly, I lost weight. Seems like a good thing, positive, happy, healthy.  Well, it is overall. But if you have a pump implanted than  weight loss can effect the pump. It doesn’t effect the running or the function of the pump.  But, the pocket in which the pump is placed becomes loose with weight loss and the pump may move, tilt.  If too much weight is lost and the pocket becomes very loose than the pump has the potential to spin which makes it impossible to refill.  I am not sure what happens at that point-I know won’t be an easy fix.  SO, the  big lesson there is lose the weight before the pump or keep weight you have until pump replacement time.

Other than those small things the pump keeps pumping and I keep walking on my own two legs in a less cloudy haze.  All in all I am happy and continue to be happy with the pump.  A real positive in AMS era.  I feel AMS good not PMS good.  And you thought good was good after all a rose by any other name….