10
Jul 2014

Not My Plan, but Yours

Not My Plan, but Yours
I just finished my 17th infusion and had my follow up appointment with my neurologist.  I had it all planned out.  I knew that I wanted to switch therapies no later than August 1 in order to have at least 4 1/2 months on a new therapy before I got a MRI.  After all my out-of-pocket was met with my insurance and I need to make sure I get that last MRI that's free to me.  I knew that 4 1/2 months would be an ok amount of time to see if the new therapy was working (no new lesions).  And, I was really hopeful to be on an oral therapy because 2 more have come out since Gilenya.  Wow, step back and look at how many times I said 'I'.  The Lord reminded me that I don't know best.
The Lord created us with these amazing minds and wants us to be creative.  Dr. Lincoln told us (Casey went with me) about research that has been going on in the last year about the risks of developing PML while on Tysabri.  Remember from my last posts, if you have this JC virus then the chances of you getting this rare brain infection are greater than those that don't have it.  Also, if you do have the virus then your chances increase the longer you take it, especially when getting into the 18-24 month mark.  So what someone decided to research is, what if you have only a little bit of the virus in your system? Are the risks the same as those who have a lot of the virus?  What they found out is that the risks aren't the same!  How amazing is that?  I was blown away by what these researchers have come up with and all within this last year.
Game plan.  Dr. Lincoln suggested that I do blood work to test how much of the virus is in my system.  If the results came back with a low amount, then I would continue through my 24th infusion before switching.  If the results came back with a high amount, then I would start Copaxone, an injection 3 times per week.  Yep, no pills.  He said the pills work differently than the injections.  The main thing is that the pills suppress your immune system so you still run a risk of developing PML even though you are off Tysabri!  Unfortunately, this has happened to some people.  Dr. Lincoln told me the blood work would take 2 weeks to come back.  So, I gave blood and walked away from my appointment with a much different plan of action than what I had in my head.  The Lord is working on me in trusting Him and not thinking that I've got this MS thing under control by myself.
The result are in.  Yep, I have a high level of the virus and the nurse is in full swing of getting all the paperwork done for Copaxone.  That definitely was not what I wanted to hear.  I don't want to stop a therapy that has made me "normal" and feeling the best that I have in the last 11 years.  I have some concerns if this new therapy will be able to control my MS like Tysabri has.  I don't want to have another relapse.  I don't....  There it is again. I.
Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him and He will make straight your paths. Proverbs 3:5-6
The Lord is still working on me to trust and believe in Him.  His grace is enough for me.  As I go through this next season,  I will remember how He has been with me through all the rough times and good times with MS.

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