Tuesday, 19 April 2016
18 April 2016 (7 months post) - being positive & feeling the benefits
So I just got back from another short weekend visit to Berlin. The airport trips are getting easier to deal with, probably for two reasons: I now have the guts to ask to be helped at the airport to not need to stand in some of the queues for boarding . And secondly I'm walking better, I've had some physio (NHS) and advice on core strengthening and although I haven't been doing as much as I should have for the exercises I'm still feeling better due to having better awareness of how my posture had become so laid back and lazy. I'm shocked how many small exercises you can do laying down to gradually build strength ... but also didn't realise how tiring exercising laying down could be, gotta be a good thing, nothing's easy in the start.
Wednesday, 6 April 2016
06 April 2016 - a decision on HSCT and I'm wondering 'what if?'
So after what felt like the longest 3 weeks of my life since the MDT meeting where my case was presented for HSCT application under Imperial healthcare trust, I finally know the resulting decision. I spoke to Johnny (MS nurse at Charing Cross) yesterday and he informed me that I satisfy all of the criteria for HSCT at the moment, apart from the fact that my MRI shows no active lesions.
My initial reaction was to be relieved that there is no sign of new activity according to MRI evidence. I was also pleased that maybe reverting back to plan A (Lemtrada round 2 in September) is a good option and certainly a less stressful one to contemplate. I was refilled with feelings of hope that my Lemtrada journey was back on track and I just needed to continue exercising to get my body back into the best condition possible. My family, friends and colleagues were happy for me and that was nice to feel their collective support.
After one day of knowing that I wasn't on the immediate road to HSCT I came to reflect on all the things I had been trying to accept over the last few weeks, heavy self research into HSCT protocols, publications and research findings. Truthfully there was some feeling of disappointment. You know if you try to accept something which you are told is necessary, eventually you search for all the positive material you can find just to focus on the potential good things you can look forward to. Claims of curing MS and improving disability is like my ultimate dream come true, but even if some people have such great responses, this for some reason isn't by any means a promise for everyone that has had HSCT.
Still I will have a MRI in 3-4 months (prior to when I would have Lemtrada again) and if that showed active lesions they would switch to plan B (HSCT application resubmission). So now I don' t even know what I want.
Anyway in the meantime, I can return back to my 'normal' daily life. My employer can be pleased to not see me back off sick due to new crazy treatment taking place at least in the medium term future I guess. Good news is now I'm going to get back onto project 'Carribean Get-away' and I can at least have something ordinary to look forward to.
Ah yeh just one other thing regarding the HSCT stuff, I came to realise that I hadn't had spinal MRI even though Dr Malik had attributed my symptoms to a spinal cord relapse (as he put it in the letter to my GP). So I am just trying to investigate how I can get MRI of my spine, as this could be the important missing link, maybe I do have active lesion(s) on my spine; in which case I could face deterioration just because we didn't look in all relevant places. So anyway I'll keep you updated on that front, I'm waiting for Johnny to return my call, I'm just not convinced it's going to be so easy getting an appointment for this MRI!
My initial reaction was to be relieved that there is no sign of new activity according to MRI evidence. I was also pleased that maybe reverting back to plan A (Lemtrada round 2 in September) is a good option and certainly a less stressful one to contemplate. I was refilled with feelings of hope that my Lemtrada journey was back on track and I just needed to continue exercising to get my body back into the best condition possible. My family, friends and colleagues were happy for me and that was nice to feel their collective support.
After one day of knowing that I wasn't on the immediate road to HSCT I came to reflect on all the things I had been trying to accept over the last few weeks, heavy self research into HSCT protocols, publications and research findings. Truthfully there was some feeling of disappointment. You know if you try to accept something which you are told is necessary, eventually you search for all the positive material you can find just to focus on the potential good things you can look forward to. Claims of curing MS and improving disability is like my ultimate dream come true, but even if some people have such great responses, this for some reason isn't by any means a promise for everyone that has had HSCT.
Still I will have a MRI in 3-4 months (prior to when I would have Lemtrada again) and if that showed active lesions they would switch to plan B (HSCT application resubmission). So now I don' t even know what I want.
Anyway in the meantime, I can return back to my 'normal' daily life. My employer can be pleased to not see me back off sick due to new crazy treatment taking place at least in the medium term future I guess. Good news is now I'm going to get back onto project 'Carribean Get-away' and I can at least have something ordinary to look forward to.
Ah yeh just one other thing regarding the HSCT stuff, I came to realise that I hadn't had spinal MRI even though Dr Malik had attributed my symptoms to a spinal cord relapse (as he put it in the letter to my GP). So I am just trying to investigate how I can get MRI of my spine, as this could be the important missing link, maybe I do have active lesion(s) on my spine; in which case I could face deterioration just because we didn't look in all relevant places. So anyway I'll keep you updated on that front, I'm waiting for Johnny to return my call, I'm just not convinced it's going to be so easy getting an appointment for this MRI!
Subscribe to:
Posts (Atom)