6 Month Neuro Report Card

[kwarendorf]

Saw my neuro yesterday for my 6 month check up. My clinical exam was good and my brain MRI was free from evidence of PML and free from any new lesion activity. I have been having some issues with my left leg lately, beyond my 45 minute exercise wall. My left leg can sometimes have a mind of its own. If I walk down a hallway and turn right it wants to keep going straight,

He seems to think that there may be some activity in my c/t-spine. He also thinks I will benefit from some PT. SO in August I will have an MRI of my c/t-spine and see the PT. All on the same Saturday and at the same place! Have I mentioned that I love my MS day spa? : - )

This Saturday will be my last Tysabri infusion. My positive blood JCV status and the fact that I am approaching 24 treatments means we are going to look in another direction. In two weeks I'm going to have an LP. The first thing they are going to look for is confirmation that my CSF is still JCV free. They are going to run additional tests looking for specific component levels. Doc said that they can tell from these levels whether or not I would respond to Tecfidera. We're keeping our fingers crossed that I will!

In the mean while, I need to clear Tysabri from my system. This will take a couple of months, during which I will get not treatment. Based on my condition he does not think I will experience any down turn during my DMD down time. In September I am likely to start Rituxan. There are two reasons. THe first is that it will provide an umbrella of protection while we hopefully get the Tecfidera up to therapeutic levels. The other reason to start Rituxan is in case I am not a candidate for Tecfidera.

That's the report. I think I'll live :-)

[Jacksmom516]

Kyle

Know what you mean about the MS day spa -  all of my MS stuff is under one roof with the exception of PT which is no big deal  - that is 5 minutes from my house.  And I absolutely love where I go for PT so it really is great.  Knowing I can go to the same place to see doc, have blood work and MRI's is wonderful!

Keep us posted on the LP results but even though you will be off Tysabri it sounds like your doc is on the ball and has a plan while you are getting it out of your system.

Take Care

Tracy

[kwarendorf]

Last LP was in January. My doc is hyper vigilent about PML : - ) We'll know more about whether or not Tecfidera is an option after the tap. I need to do some reading on Rituxan. So far it sounds pretty good. I Know my doc likes it. I have one last tysabri dose this Saturday so we have sone time...

[Lulu54]

Didn't you just have an LP done a couple months ago? I  hope your doc isn't that needle happy even though I would do another LP if my neuro said it was needed.

The washout period for the Tysabri is about 4 months and I am so glad the doc has a plan to protect you during that time.  The kickback on leaving that therapy has been shown to have wicked relapse side effects. You could remain on Tysabri and be monitored every couple months for PML but that gets to be cumbersome.  

I want to go to your MS Day Spa - it is great to have everything under one roof.

[rendean]

Glad your update was a good one with no PML and new lesions!

Ren

[doublevision1]

:-)

[kwarendorf]

My GF just looks at me and says"You mean the LMNO was no indicated in your QRST. But your WXYZ was OK?" :-)

[doublevision1]

Good update Kyle.  Glad your brain is PML free.  Hope your CSF is JCV free too.  Good luck with the MRI.  Glad there are more DMD options available to you.  Kinda cool how we RRMSers, SPMSers, etc. can have entire conversations in abbreviation and totally understand what we mean.