Update on Court
Posted: Wed Feb 10, 2010 10:21 am
Been a little bit since I've updated on where we are with things.
We got Courtney's GP on board and she gave us the referral/script for an MRV (luckily we've had the same GP since before the MS so she is very open to helping us get whatever testing we need done). I've been in touch with the IR department at a local university hospital and they are waiting on AIM for their approval on the procedure so we can get scheduled for the exam.
The really great news is this IR is very interested in CCSVI and has a good relationship with one of the neuros at Courtney's MS clinic (she currently goes to a couple of Neuros at different clinics). The IR doc and the neuros will both be involved in this testing and evaluation and from what the nurse told me they are working together to determine what protocols they want to use in testing for CCSVI going forward (they are familiar with the currently published CCSVI diagnostic protocols).
The bad news is Courtney's fatigue is getting really bad, she has very little motivation to do much of anything and it kills me to see her like that. I've got her on Ginko and Horse Chestnut now in addition to her other supplements and bumped up her D3 to 6k IUs daily. She hasn't been on any approved MS treatments since her last Tysabri infusion last September and she doesn't want to make a decision on anything until we can make it through the CCSVI diagnostics. All the MS drugs she's taken over the last three years have done nothing to stop her progression (yet no new lesion activity in any of her MRIs over the last 3 years...in that same time has gone from about a 2.0 on the EDSS to a 6.0-6.5).
I think about all of you out there fighting MS every time I watch my wife hobble behind her walker and I hope you all get relief soon.
Will post any updates back to this thread.
Cheers,
John
We got Courtney's GP on board and she gave us the referral/script for an MRV (luckily we've had the same GP since before the MS so she is very open to helping us get whatever testing we need done). I've been in touch with the IR department at a local university hospital and they are waiting on AIM for their approval on the procedure so we can get scheduled for the exam.
The really great news is this IR is very interested in CCSVI and has a good relationship with one of the neuros at Courtney's MS clinic (she currently goes to a couple of Neuros at different clinics). The IR doc and the neuros will both be involved in this testing and evaluation and from what the nurse told me they are working together to determine what protocols they want to use in testing for CCSVI going forward (they are familiar with the currently published CCSVI diagnostic protocols).
The bad news is Courtney's fatigue is getting really bad, she has very little motivation to do much of anything and it kills me to see her like that. I've got her on Ginko and Horse Chestnut now in addition to her other supplements and bumped up her D3 to 6k IUs daily. She hasn't been on any approved MS treatments since her last Tysabri infusion last September and she doesn't want to make a decision on anything until we can make it through the CCSVI diagnostics. All the MS drugs she's taken over the last three years have done nothing to stop her progression (yet no new lesion activity in any of her MRIs over the last 3 years...in that same time has gone from about a 2.0 on the EDSS to a 6.0-6.5).
I think about all of you out there fighting MS every time I watch my wife hobble behind her walker and I hope you all get relief soon.
Will post any updates back to this thread.
Cheers,
John