Monday, March 5, 2012

MS and Tysabri.. thoughts and questions to myself

My fourth Tysabri infusion is scheduled for Wednesday afternoon.  I keep asking myself if I've seen any benefits or difference in my MS since I began this treatment in December and the truth is that I have not.  I really hadn't considered the "feeling better while on Tysabri" possibility until I had posted the question on Facebook, and 8 out of 10 responses were ecstatic at how much better they felt almost immediately.  Nah, that's not me at all and I was hoping it would be!

As those of us with MS know, before beginning Tysabri we need to be checked for the JC virus (John Cunningham virus or JCV).  Testing positive for JCV increases the chance of getting progressive multifocal leukoencephalopathy (PML), a rare brain infection that usually causes death or severe disability.  PML tends to happen in people with weakened immune systems, which is exactly what MS does to us.  I DID test positive for the JC virus and after discussing the risks and possible benefits with my neurologist, chose to begin this therapy.  People on Tysabri are closely monitored through MRI's and blood work to make sure no problems arise, as he is doing with me.

Even after having a few infusions, I'm still on the fence as to whether or not to continue with Tysabri.  As I've mentioned a few times before, I've had MS for 21 years and am still ambulatory, live on my own, drive a car, do some light housework (I have a very nice lady and friend who comes to my home twice per week to help me with most of it) and I am afraid to rock the boat with these infusions.  I have been mostly "winging it" with my MS for years and it seems to have worked for me.. so what am I doing now?  What if putting this medicine, which I'm sure is full of all kinds of poisons, in my body will actually make my MS worse than it was?  The only reason I chose to go on Tysabri was to stop the pain I live with day in and day out.  Some days, the pain is so severe that all I can do is lay on the sofa or bed and cry as my body shakes in spasm after spasm.  This was no way to live so I did the only thing I could think of, which was start these infusions.

During the last year and a half, I have been going to a chiropractor who adjusts my hips, pelvis, shoulders and back VERY gently, as must be done with those of us with multiple sclerosis.  The difference in me, since going to the chiropractor, has been astounding.  For a time I wasn't able to stand straight up, laying down brought pain to my hips and sitting down caused intense pain in my derriere, but it turns out that the pain was coming from my pelvis (which is somewhat tilted in a position that makes my life hell).. so I was fucked in every position.. and not in the good way! lol  And then the weather would change and the pain would kick in again, even with twice weekly adjustments.  I was taught a few exercises by a physical therapist and do them almost daily, which does help, but most of the pain is still present.  I'm also medicated to a small extent, which makes me "think" I feel better, but come on.. who am I kidding?  I've chosen to cut my anti-spasm/pain pills in half because I'd rather feel some pain and know what is happening in my body than band-aid the problem with drugs.  But the question remains in my mind.. should I stick with Tysabri and all of its side effects or do as I did for so many years prior which was live my life without too many MS meds?
I've already accepted that I have MS, which becomes more difficult each time new lesions bring more symptoms and I have to re-accept it again and again. Yet I wonder if I'm doing the right thing in taking Tysabri.  I want to change how the MS will affect my life in the long run but maybe this new medication will "piss off" my MS!  What if I'm doing the wrong thing and my disease will progress differently because I was messing with it so much?  UGH!  What to do?!  One decision I have made, however, is to continue with the Tysabri until I have new MRI's taken and I get my labs done.  I guess they will tell the tale of what is happening inside my body and I can make a more informed decision as to keep taking it or allowing my MS to do as it pleases.  I just can't imagine living with more pain than I've already experienced....

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