Almost 12 months on from HiCy - MRI Results and Round Up
Posted: Mon Apr 06, 2009 7:37 am
Hello All,
Mel's first dose of HicY was April 24th 2008.
So here we are nearly a year on and she had her latest MRI and all is good, well all is excellent.
No enhancing lesions.
No spinal lesions.
No black holes.
Stable and reduced existing lesions.
No signs of activity at all.
The best news is this is the second MRI that states no black holes, when diagnosed she had two black holes (and was used as justification by the Neuro to go straight onto Rebif - he described the MRI's as indication of 'chronic' RRMS). Now I've read many an article and paper that says that black holes are permanent - they must underestimate repair capability. I didn't say too much after the last MRI as it could have been an oversight but this time the absence was actually remarked upon by the MD reviewing the MRI.
Mel's now relapse free since February of 2008 and has recovered nearly all of the disability she'd accrued to that point, mainly: left side weakness, hand tingling, severe double vision in left eye and pars planitis, shuffling gait and extreme fatigue.
Some days are still better than others of course, in very hot weather or very long stressful days she will be come tired and get some ghost symptoms (usually hand tingle or blurry left eye) but after she cools down/sleeps she's back to normal. We explain this to ourselves as the fact that she has no 'back up' wiring like I do, her wiring has good connections under normal load but no real safety systems! It's a sign to cool down or get some rest.
She's learning to manage this but the very fact that she is working more than full time, been promoted at work and we are traveling a lot and all that occurs is a battery drain then we are very, very lucky indeed.
She's been doing so well that we've not had to go to Hopkins for the last two check ups, I think we're going back next month or so and it'll be good to have them do their in depth tests to see where she is EDSS wise and with the reaction tests etc.
There's still move recovery to come, I'm convinced of it - all of this has been with zero exercise or PT. I'm sure once she starts working on that (and I get back into shape too - we've kinda pressed the pause button on life over the last 18 months) then she'll feel even better, that wiring will get stronger and develop back up circuits (I know I am stretching this analogy!) and she can gradually let MS slip her mind.
That's the goal, and I for one and very grateful to even have the opportunity to seek that goal. Eighteen months ago our goal was to 'manage' her disease (how does one do that? By manage I think we really meant 'react' to her disease) as best we could and hope for the best.
For RRMS'ers there is no reason to adopt that stance. There is HiCy, there is Campath there is Chemo+Stem Cell's. Go hard and go early is my advice.
Good luck with whatever you choose.
Jamie
Mel's first dose of HicY was April 24th 2008.
So here we are nearly a year on and she had her latest MRI and all is good, well all is excellent.
No enhancing lesions.
No spinal lesions.
No black holes.
Stable and reduced existing lesions.
No signs of activity at all.
The best news is this is the second MRI that states no black holes, when diagnosed she had two black holes (and was used as justification by the Neuro to go straight onto Rebif - he described the MRI's as indication of 'chronic' RRMS). Now I've read many an article and paper that says that black holes are permanent - they must underestimate repair capability. I didn't say too much after the last MRI as it could have been an oversight but this time the absence was actually remarked upon by the MD reviewing the MRI.
Mel's now relapse free since February of 2008 and has recovered nearly all of the disability she'd accrued to that point, mainly: left side weakness, hand tingling, severe double vision in left eye and pars planitis, shuffling gait and extreme fatigue.
Some days are still better than others of course, in very hot weather or very long stressful days she will be come tired and get some ghost symptoms (usually hand tingle or blurry left eye) but after she cools down/sleeps she's back to normal. We explain this to ourselves as the fact that she has no 'back up' wiring like I do, her wiring has good connections under normal load but no real safety systems! It's a sign to cool down or get some rest.
She's learning to manage this but the very fact that she is working more than full time, been promoted at work and we are traveling a lot and all that occurs is a battery drain then we are very, very lucky indeed.
She's been doing so well that we've not had to go to Hopkins for the last two check ups, I think we're going back next month or so and it'll be good to have them do their in depth tests to see where she is EDSS wise and with the reaction tests etc.
There's still move recovery to come, I'm convinced of it - all of this has been with zero exercise or PT. I'm sure once she starts working on that (and I get back into shape too - we've kinda pressed the pause button on life over the last 18 months) then she'll feel even better, that wiring will get stronger and develop back up circuits (I know I am stretching this analogy!) and she can gradually let MS slip her mind.
That's the goal, and I for one and very grateful to even have the opportunity to seek that goal. Eighteen months ago our goal was to 'manage' her disease (how does one do that? By manage I think we really meant 'react' to her disease) as best we could and hope for the best.
For RRMS'ers there is no reason to adopt that stance. There is HiCy, there is Campath there is Chemo+Stem Cell's. Go hard and go early is my advice.
Good luck with whatever you choose.
Jamie