Unfortunate title, but there is a programme next week about MSCT and might be of interest.
Channel 4 Thu 23 Nov, 10pm
Documentary following leading lawyer Mark Lewis, the man who fought the News of the World in the phone hacking scandal, as he joins a clinical trial that might offer a breakthrough cure for multiple sclerosis. He learned he had the condition at the age of 25 but his high-profile battle with the tabloids has exacerbated his symptoms. Now 50, he travels to Hadassah University Medical Centre in Jerusalem, where the work being done could have a positive impact on neurological conditions such as Alzheimer’s and Parkinson’s.
I want to see this. Does HSCT help people in their fifties who’ve had MS for decades? And do you have to get off Gilenya first? (Bet they don’t discuss that in the programme). Anyway, thanks whammel for posting this.
As far as I know, it’s (like almost everything else) of more use to people with RR. And it’s not very likely to improve symptoms caused by years old nerve damage. So for people with progressive/advanced MS, it’s not terribly promising.
But, any and every potential treatment is good. So it’ll be interesting regardless of it not being useful personally.
Hi Sue. Mark has secondary progressive. Spotted 44 years ago. MRI diagnosis 25 years ago. This treatment actually reversed some damage. Mandy Mark’s other half
This treatment is different from others I have heard about.
It really didn’t have down time or side effects. The results where immediate. Mark has secondary Progressive MS. He hadn’t been able to clap his hands for years and years he can now. He can shake hands using his right hand. I think you need continued injections of stem cells to reap the full benefit. It’s really just having an epidural injecting your own stem cells but they are trying to see if it works in a drip form into the arm too. Side effects-headache. It is in Israel at Hadassah hospital on trial at the moment. It’s very exciting
So for MSers generally. I was diagnosed with MS in 1991 after a scan but had first been suspected of juvenile MS when I was 8. I have Secondary Progressive MS. My right arm lost all use by 2007. Hope this encourages you
Hi, just watched this on catchup. Mark, you look great now - so much better!
I’m expecting that friends and relatives will be telling me to go to Israel and have the treatment (not that I need an excuse to go there!) but I don’t think I’d fit the criterion of being determined enough. And I have a really low pain threshold…when I had my lumbar puncture for dx the first time I had loads of local anaesthetic which helped especially as they weren’t able to get the needle in. The second time was done by guided MRI and loads of local again so no problem. I’d be really nervous about having that without the local anaesthetic and MRI guidance.
Interesting though that there’s no chemotherapy involved and that you were a suitable candidate with SPMS.
Check out the Breakfast TV interview this morning. Go in at about 2hours 51 minutes. BBC One - Breakfast, 20/11/2017 This link will self destruct at 9.15am tomorrow.
As a 44 year old chap that has had MS for 22 years, SP for the last decade, this is something that is of great interest to me. It on the planner ready to record. Mark/Mandy - great to hear your thoughts and comments, thank you for sharing here. Charlie
Well, while I admired the guys grit and determination, and totally empathised with the emotions, particularly the anger, I feel this is just more research. 20 years ago there wasn’t much in the way of dmd. Perhaps in the future, another 20 years, this treatment may be a viable option for some people. Personally, I was disappointed. It wasn’t the bright light of the near future I was hoping to see. Still, we need trials like this and brave people like him, to pave the way for the future.
I watched with interest as there has been quite a flutter on MS forums. It seems to differ from the trials in the UK where they had folks in isolation and nuked their immune system. Best of luck to those who take part. Caused some discussion in our household. Mark has obviously had the funds to fly out to Israel several times, and pay for the treatment. Most of us don’t.
They say that when faced with diagnosis, we go thru shock, denial,grief, anger, then acceptance. Seems Mark hasn’t got to number 5 yet. I get what he said and why he feels its a battle. But for me, I’ve accepted what I am, and will just use my resources to give me a better quality of life NOW, as I am.
My partner has kidney disease, so both of us live with a life limiting disease and know we have to make adjustments in our expectations. Ironically, to get anything from the DWP re PIP and DLA consists of convincing them you have indeed got a disease that is incurable, and won’t get better!!
Poppy is right, I was diagnosed in 1993 and didn’t hear about DMD’s for nigh on 15 yrs! Turns out they aren’t suitable for my type of MS (i did ask).
My heart went out to Mandy. Yes, love you ARE his carer and he should acknowledge that and give you a break now and again. Its bloody hard work pushing a wheelchair! Good luck to the both of you.
I also have this programme on record so will be watching it tonight, my daughter who is 26 with a 2 year old toddler was diagnosed in October and we are still going through the counselling/medication choice stage. I am interested in reddivine’s comments regarding PIP and DLA because my daughter works full-time and is extremely fatigued and wanted to look into any benefits to enable her to go part-time, any advice would be gratefully received.
Can anyone explain how stem cells injected into the base of the spine repaired Mr Lewis’s nervous system to the extent that his mobility was increased within two hours?
I’d also like to know what physiotherapy he had during his first spell in Israel and did it differ from the regime he has in the UK? The introduction referred to MS as a “brain disease”.
No mention was made of the spinal cord. Mr Lewis’s final statement that “The have found a cure for MS” seems premature and irresponsible.