Mariannel’s Viral Cerebellitis Blog

23 May, 2009 – 14+ months on

May 24th, 2009

I don’t actually have anything new to say but for the benefit of those reading blogs when deciding whether to go (I know I did and was disappointed many stopped immediately after treatment) I thought I’d better report that I still haven’t lost the progress I gained in the months/year after treatment. There is nothing new but nothing’s lost either.

Also I heard about a BBC programme that was somewhat sceptical of the benefits of current stem cell treatment. Using the case of Dakota Clarke to illustrate. I didn’t actually see the programme myself but Al (who lives and works in England Monday to Friday) did and he said one of the issues was that a test done before and after treatment showed no difference despite the parents being convinced there had been progress. On that, I think many tests in the West won’t show the progress made by stem cells. E.g. I had an MRI of the cerebellum that showed no difference yet I’ve done other measurable things – myself and with my physio – that demonstrated progress. That has given me certainty that progress – however small – actually exists and isn’t just in my head. It would be helpful if Beike suggested some simple before and after tests (for instance to be done every two months after treatment) for every patient but until that happens – if it ever does – I think many people will have to make up their own ways of measuring progress independently of what the medical establishment in the West has to offer. I bet many people like myself are running a one-man-show (or one-family-show) when it comes to stem cells because those who care just don’t know enough to advise and those who actually know enough don’t care enough to get involved. And as the ”system” doesn’t really seem geared towards measuring the results of stem cell treatment it is up to the patient/the patient’s family to think of relevant ways of monitoring proceedings. If a need for that is felt of course. Sad but the way it is. In my world at least.

Entry Filed under: Uncategorized,viral cerebellitis