Post 6 month mri.
I haven't posted as much as I intended due to other aspects of life and the bumpy road of recovery!
For those that don't know, my name is Steve Holt, I'm a 53 year old Londoner diagnosed with PPMS in March 2011. I am the first British man to undergo hsct in Moscow. I was cared for by the amazing Dr Fedorenko and his team in June/July 2014. The care, love and general upbeat attitude of all there, especially the inimitable Anastasia Penchenko is truly remarkable. An experience that touched my heart and will never be forgotten. Thank you Team Russia xx.
And so, briefly my journey. I have been generally well, a reaction to acyclovir and septrin got me hospitalised for a week and then another reaction to their replacement, Dapsone, jaundiced me and raised concerns about my liver. After a scan and making my own decision to cease taking the pills, everything returned to normal. No more prophylactics for me! A chest infection quickly followed by another chest infection knocked the wind from my sails Christmas time, and put me flat on my back in bed for 6 weeks. Worst thing when anything like that happens is the distance it does put you back in terms of recovery. Lost co-ordination and mobility undoes all the hard work done in the gym and at the physios. I was going 3 times a week and enjoying it, getting stronger and more confident in my abilities. On a couple of occasions I walked without my rollator just holding on to Carols arm which for both of us was an unbelievable achievement. Since the chest infection I am struggling to get out of bed but start the gym again tomorrow, determined to get back to where I was and better. One thing we all have is hope, don’t ever forget that, Positive Mental Attitude is the best prescription for us all.
Aside from the chest infections, 2 other minor irritations spring to mind. Incredibly dry skin and head resembling a beetroot!! By that I mean at around post 3 month my whole head would fill with blood and go bright red and burning hot! This happened every afternoon for around 8 weeks and has thankfully mostly returned to normal, although it still happens occasionally. It was so bright Im sure it could be seen by aircraft flying above!
So, my mri;
05/01/15 at the National Hospital for Neuroscience and Neurology in London my 6 month post transplant mri was carried out as directed by Dr Fedorenko. This is to be compared with the pre transplant mri from Moscow. What we are really looking for is no change, no further lesions (scars) and in some cases a shrinking or disappearance of pre hsct lesions.
27/01/15. A meeting with my Neurologist to compare. Unfortunately he hasn't had time to look at my scans so he calls up my file on the pc whilst we sit in front of him. Before people start thinking he should've found time I'd just like to say I've been very lucky with my Neuro. He was the first man to diagnose me after probably a couple of years of doing the rounds with numerous other doctors and at the time of diagnosis he said,'No treatment, no cure" and he also said "Be positive, stem cells will find the way for you." He's a great man. So as he called up my mri he read a note from the radiologist. "New lesions showing disease progression." He immediately followed that with "Don't panic, let me look and I will come back to you." He had already commented on how well I look and how much my speech had improved.
16/02/15. Neuro phones whilst Im in a shop so call was short! His assessment was "mri showed minimal new lesions but with recent activity." He had previously agreed to 6 monthly chemo infusions to hopefully finally kill off the MS and has agreed to consider the opinions of Dr F. I emailed Dr F and Anastasia as soon after the 27/01 meeting and they, as usual, were both absolutely brilliant. Dr F told me to email the mri to him asap and not to do anything, particularly start chemo, and Anastasia followed with her own email, kind and sensible words that mean a lot.
As all the Brits on the forum will confirm the NHS moves at a snails pace! They will only release my mri on disc, why they can't just email me a copy I don't know, and I requested it immediately. I chased it again yesterday.
How do I feel? I feel ok, no, I feel good! There are known, knowledgable and experienced people on the fb pages who are of the opinion that mri doesn't tell the whole story, especially where PPMS is concerned. I have always been able to nod in agreement whenever I've read their comments and I have a hell of a lot of respect for them. Even my Neuro said, "You look good, you sound good, therefore you are good!
Will keep you informed with shorter posts as and when things happen. One more thing, people often ask if Im glad I had it done? My answer? "You bet I am!" x