HSCT

Hi all,

just looking for opinions on HSCT? I am looking into this as a possible option. I am relapsing remitting, although suspect I may be edging into progressive now. I’ve had M.S for 13years now and my mobility is definitely deteriorating. I have requested an MRI to see what is going on and to discuss with my Neuro but I’ve been reading up on this and what I am seeing seems quite positives?! Just wondered if anyone has had this? And any thoughts on this please?

Thanks loads you lovelies xxx

A miracle cure!

Although perhaps a path to tread carefully, fortune does tend to favour the brave.

Initially only available in Mexico and Russia, i understand a few clinics in Ontario are accepting patients for this procedure.

The UK HSCT for MS & Autoimmune Diseases | Facebook is probably a good place to start, as it is available on the NHS if you fit the criteria.

Thanks Whammel, I am on that group and a few others including ones abroad such as Moscow and Mexico. I have been advised who to refer to at KIngs hospital in London and that my GP can do this, so think I may start this process as I do know the waiting list is quite large, so my thinking is there is no harm in doing this.

xx

I agree there is no harm in finding out what your options are and a getting a balanced view would be helpful. You probably know about the Barts Blog already, but they cover HSCT quite regularly and a good source of reliable information.

http://multiple-sclerosis-research.blogspot.com/2016/01/london-ms-ahsct-collaborative-group.html

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Reading this, I just realised that Moyna hasnt been on for a while.

She went abroad for the treatment, didnt she and did report good things? Wonder how she is? Anyone in touch with her?

pollsz

Lisa, I`ve just looked back for Moyna. She did reply to a post on 12 Jan , about the stem cell treatment.

She had it done in Mexico and says she is so glad she did, so I guess she was well then,

Maybe she will see this and reply, or you could pm her.

pollsx

Hi Lisa,

You might find Caroline’s story interesting https://carolinewyatt.com/

George

Thoughts. Lisa?

Treat this a a sort of “cost/benefit analysis”, or “risk assessment”.
Like: “If I go through with this, will the cost in money, time, treatment, give me a quality of life improvement for enough years to make me glad that I did it?”

Lets change the subject for an example:
A friend of mine has a spinal problem.
A few years back she could have had an operation, but was told that it would only arrest the decline, and she would be no better.
Last year she finally had to have the operation, and has now spent 6 months learning to walk again, but is still in pain.
When first offered the op, she could walk down the road to visit, now she could not manage more than 20 steps or so…
Had she said yes in the beginning, her QoL would have been much better, and would have improved the next 20-30 years for her.
As it is now, the next few years do not look good at all.

Now, ask yourself the question above …

Geoff

Thank you for all your replies. I am definitely looking into this and the more I research the more I think it is worth a shot. The blogs I have been reading are positive. Geoff your point is very valid, your poor friend. I just keep thinking, I have deteriorate since last August and if I stand by and do nothing then this path will continue and I want a better life, not just for me, but for my 7yeat old son and my hubbie. It is about quality of life. It’s a gruelling treatment but m.s is gruelling and I’ve seen how awful it can be. If I can hair things at this stage then I’ll be chuffed. If I don’t try, then I’ll never know either.

Poll I will try and find Moyna too xxx

Halt not hair … Oops. Xxx

Hi,

I have popped back on as I realised that I had a PM from Lisa. I am doing really well and seeing improvements. My main aim was to stop the progression and this will only be evident after time.

I have not been on here much anymore as I am a member of several HSCT forums.

I found the treatment straightforward and was expecting it to be much worse than it was.

The BBC journalist Caroline Wyatt is just back from Mexico and has done a really good blog on the internet. I suggest you read it. She had been turned down by London for HSCT.

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My Neurologist is probably one of the Main guys at Kings College Hospital London, I base this on him mumbling about possible stem cell treatment for me in the future maybe and the fact i know he is one one the main neurologist there. One of the the perks to living in London with MS i suppose!

Good luck Lisa, it would be good if you could get the treatment.

Just updating this post. I am going to Russia on September 25th this year for this treatment. London was becoming harder and harder because of the strict criteria. Also it is a lengthy process in getting seen, getting another MRI with contrast, being discussed at an MDT to be put forward for HSCT, then if accepted the journey starts. But the process then also seems very drawn out and delays happen due to beds and the fact it’s not urgent plus the drug they use (ATG) has harsher side effects that the one they use in Russia and Mexico. I’ve heard much more positive stories from people who have been abroad and been speaking to people too about their experiences. I just feel I can’t wait for London and the fact the process seems quite stressful, makes me just want to go for it. I want to stop this disease and get off the train. I can feel I’m declining… I have a choice, I can either watch, wait and see or be proactive and attempt to beat this, even if it only gives me another ten years before it rears its ugly head that gets my son to almost an adult. And I get to enjoy his life without the worry of the constant decline. And if it does rear its ugly head and I progress at the pace I have that gives me another 11 years before decline, plus medication may have advanced and therefore I may have more options. So I’m going for it, wanted to keep you updated. Going to do a fresh post too just in case no one sees this bit. Wish me luck

xxxxxxx