I thought the same too, a little sceptical. I thought chemo was needed to kill the immune system first, because I thought it was that that eats away at our myeline sheaths that protects our nervous system and then replace harvested stem cells to rebuild the myeline. Have I got it wrong? Jane X
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I know this irrelevant to the big question (is this a cure?) but why didnāt they give Mark local anaesthetic when they did the lumbar puncture? I felt nothing at all at the time when I had a lumbar puncture. I felt very weird afterwards and the site was sore when the local wore off ā¦ but I canāt understand why any doctor would do a lumbar puncture without a local. Did they explain, Mark or Mandy? Incidentally, probably no-one will know if this is an effective treatment for another ten years. If Mark doesnāt start deteriorating again by then, itās a cure. Best of luck, Mark.
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This is the Barts Blog view. Multiple Sclerosis Research: Searching for the Miracle Cure. MS in the Media
hiya
i watched this and went to bed upset. sod all to do with my ms or markās but the way that he appeared to treat mandy.
perhaps it was the way it was filmed? i dunno. i do know that getting your head round this ms malarkey is here to stay is essential. being that blinkered and adamant does nothing to help those trying to support you.
that said i do wish that both mark and mandy find their way through this-like we all have to do on a daily basis.
ellie
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Just a few points: 1. Whether or not the title says ācureā is irrelevant. I believe that there will be a cure. If you donāt then that is your prerogative 2. They use your own stem cell not from a donor. 3. The trial uses spinal and intravenous injections. It is double blind so it might be the IV that I had as a none placebo. 4. I have not had any physio at all my trips to Israel were very short. 5. Time for results. Clearly this is a long term project but the MRI show signs of decrease in demyelination. 6. My anger at Mandy is of course terrible and unforgivable but she is incredible, supportive and caring.
It was a really bad day for Mark. As part of the trial to see the progression or not every month Mark would have An MRI scan. Mark is extremely claustrophobic and canāt do it without being sedated ( completely ). His sedation had side effects of making him argumentative afterwards for about 48 hrs. Please donāt worry about me, I am a lot stronger than I came across on the documentary.
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Oh Grandma, You took the words right out of my mouth; no one can say why heās better, but he is. With every treatment, thereās a little placebo tied up in there, and with the Stem Cells; wow! To all the ones wondering whereās the Chemo, HSCT stands for Haematopoietic. Stem Cell Treatment; no mention of Chemo. Cheers Mark and Mandy for letting us see a very private experience. In my 44 years of living with the lurgy, I can truthfully say if it was not for pathfinders like you and Caroline Wyatt MS would be forgotten. Please give up any thoughts on becoming an Olympic Champion. Murdoc was easy but that would be a bridge too far. George
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For Clarity Let me explain our story:
i had heard about this trial in Israel. Like many people you think that something is for others and unreachable for yourself. I literally woke up one morning and thought that I am going to get Mark on this trial by hook or by crook. I started calling everyone I knew. Bingo my best friends Mum knew someone that was a Professor at Haddasah. Others who got on ( and there are people from many different countries and all religions and races) didnāt know anyone thru anyone. It was a trial so nonpayement for medical treatment. Yes we did have to pay to get there and back and hotels our selves. It wasnāt cheap ( financially it was extremely difficult for us) everyone should realise perceptions are not always reality.
The research team and medical crew are amazing and really are breaking all pre conceived ideas on how MS can be tackled. For us it was huge not having any down time. No chemo nothing evasive no time for Mark off work. We would fly over the weekend to Israel.
I felt selfish if there would only be a solution for us, I want a solution for everyone so however painful it is/was for me opening up to a TV crew if I can bring awareness and maybe donate I feel as it will have been worthwhile.
Itās not an easy journey whether itās you who has MS or the people around you trying to make the world around as positive as possible. I realise in life I donāt have the luxury of leaving things to others I have to do it.
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My husband (with PPMS) is currently in his second year of a virtually identical trial based at south mead Hospital in Bristol - he had his stem cells harvested then had the first infusion of either treated cells or a placebo. A year later he had the opposite. The only difference is that the stems cells were put back through a drip into his arm and not injected into his spine. He has regular tests identical to the ones shown in the documentary. We are all of the belief that he had the treated cells first time round as his symptoms hardly progressed in that year whereas this year they have steadily got worse. The trial is ongoing in Bristol and heās under the impression they are having difficulty in recruiting enough people to take part. He would very much like to have the treatment regularly even tho itās not been fully trialled or approved but have no idea whether thatās possible or where it could be done. If he could just stop his symptoms progressing any further he would be delighted and is now frustrated that it could be years before the trial ends.
Markās story resonated with us both, from my husbandās perspective, the frustration of his body not doing what he wants it to and from mine, the patience required to care for him. My husband was also a highly competitive man driven to succeed in his former business role - sadly his symptoms have now led him to take early retirement.
He was offered a few different trial options and we both felt that stem cells were the way forward and remain positive that a breakthrough will be made.
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mandy
thanks for that-thats why i mentioned that it may have been the way it was filmed/portrayed. for joe bloggs-me-watching its was uncomortable viewing seeing what you appeared to endure.
ellie
I am just replying to Kittie kat. You said your husband is having trials at southmead hospital for his ppms and thought that there was problems with recruiting for this. I also have ppms, i also go to southmead hospital to see my consultant and everytime i go i am told " sorry nothing we can do except send you to a bladder specialist". I believed they were aware i was interested in trials as everytime i go i ask if there are any and would like to be considered for them. I even stopped going for a time as it was always negative, yet i have never been told that they are running trials at the hospital i go to. So first thing monday i will be be trying to find out why this is so. Thank you
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Mark and Mandy Great respect to you both for signing up to that warts and all exposure of your lives - canāt have been easy. My wife and I saw many similarities with our own experience. Best wishes for the future BTB
Mark and Mandy thanks for sharing your story - please keep us updated.
Best wishes,
Fay
SPMS.
Yes. Thanks for sharing. It didnāt seem much of a miracle cure though. Your symptoms did appear to be a lot better at the end of the programme though, especially your speech. I have had RRMS for about ten years. I donāt take any medication. I have tried three; Copaxone, Rebif and Tecfidera. I now just take supplementation. I am incredibly well. I had a really bad relapse five an half years ago which put lesions on my spine. I had fifteen different symptoms. I havenāt had a relapse now for two and a half years. Touch wood. I believe that my regime is working at keeping relapses at bay. I think that lifestyle can play an incredibly important role in keeping us healthy. Thanks once again Mandy and Mark for sharing.
I have just got round to watching this documentary. The most interesting point for me was in the end titles which stated, unless I miss read it, that the clinic had stopped the program, did they have all the evidence needed or did they feel that it was a pointless process and they wonāt going to waste any more money. I developed MS (secondary progressive) in 1975 when I was 16. By 1995 I had could no longer work, my wife divorced me and my house was repossessed. I now live in a council flat which was adapted for me. I live alone but my daughters are only a text away and I have superb neighbours. I do not have carers, I can get from my armchair into my electric wheelchair and onto my bed. I can make a cuppa, and put food in the oven. The universe has shrunk to the size of my flat. Iām not whingeing, merely stating facts. Any āmiracleā cure will be only be available long after I have shuffled off this mortal coil. If something were to be found it would take years before it became widely available Finally my mum who is 87 has had MS(relapse/remit) since the late 1960ās, and no they donāt know if it hereditary.
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You read it wrong. This particular trial is finished the clinic is still open hopefully they will start a new trail soon.
Info for those interested:
How do I take part in a clinical trial?
Thanks for sharing. It sounds like it is really tough for you. I really admire your mindset.