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Changes have made me Blog

I thought it was time to share this, I put it in the PPMS section but it turns out now that do have the more usual type of MS after all

Sonia x

great news sonia!

really interested in stem cell therapy but i could never afford it.

need to get you some nine inch nails tickets to celebrate!

carole x

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Good for you Sonia. Great attitude hun as usual.

Be interested to hear how you get on.

Well done Sonia.

Shazzie xx

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Thanks ladies

Carole, I’m glad to say this isn’t quite as risky as popping over to Russia, no chemo for starters and yes, cost will be the regular trips to London and time off work Self-employed and already been 3 or 4 times just to see about this.

Shazzie, you know I’ll keep you posted hun, fingers crossed my cells grow well now

Sonia xx

Hi,

Can someone pls tell me how you volunteer for such trials , is it just through the be in a study link on here?

Hi Schoey,

I’d recommend looking at the NHS & the MS Smart websites to enrol on trials.

​I my case, I was referred to a neuro in London after a conversation with my neuro Rehab consultant, I expressed my interest in trials and he referred me to a neuro that was involved in trials. I have to be honest, I can’t actually remember exactly why he referred me (MS brain!)

Anyway, I wasn’t offered any trials when I met with him but he agreed with my thoughts on possible RRMS - I had recalled some historic stuff that I had not discussed with anyone before. In his letter it said drastic action was required. We had discussed 3 DMDs and an MRI (with contrast) was booked. It was another Doctor that contacted me after she’d had sight of my MRI, this was before my follow-up appointment with the neuro. The fact I had two ‘active’ lesions (made me quite a rarity apparently) and ‘resolved’ lesions,the pair together proved RRMS. A doctor seeing my MRI was what started it for me. I’m not joking, she rang me on a Sunday afternoon

I think a great resource is the St Barts Blog http://multiple-sclerosis-research.blogspot.com/ it was the only place I could find the most info about the trial I’m on. Hope that’s of some help.

Oh, and speak to your MS nurse. I know mine has mentioned trials to me, not ones with medicine necessarily, more emotional ones but your MS nurse might be able to best guide you. My MS nurse was the one that prompted me to think a bit more about the past, probably in conversation when she winked and said “you probably had it for ages”. My weirder symptoms actually easily go back 10/12 years before diagnosis.

Hope that helps

Sonia x

That’s great info thanks Sonia.

The UK trials gateway is a good site I found through NHS so ta for info, I realise I need to be offering my body more, sounds wrong but you catch my drift!

Tee hee I’ve actually been considering donating my brain & spinal cord to MS research when I die.

I used to pass out if I had a blood test, amazing what MS does to your perspective In the last few weeks, I’ve also given blood for another trial… twice!

Hi Sonia, things are going well and you feel hope which is great. I looked up the Streams Trial and it is mesenchymal stem cells that they give you. I believe (correct me if I am wrong) that these stem cells are involved in repair as opposed to targeting the immune system to reset. The stems cells that target the immune system are hematopoietic stem cells.

For hematopoietic stem cells you need to have chemo to kill your old immune system. But with the mesenchymal you dont.

Is that what you have been told ?

Thanks Sonia

Moyna xxx

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Hi Moyna

It’s certainly my understanding yes, and as it’s double blind I will get my cells back but I won’t know when. The danger element of chemo taken out is so much more appealing for me. I had to ask the doctor how to pronounce mesenchymal, luckily I’ve not had to say it!

I understand that the aim is repair but I would settle for being able to put the brakes on It’s for rapidly evolving MS and I guess I do fit that profile if you saw me with my rollator now, as opposed to my pole two years ago. There is quite a lot of stuff on that St Barts blog, it’s quite a specific set of criteria to meet for the trial but I guess that way they’ll know if it works for the trickier cases.

My only worry right now is will my cells grow? I think they need to get to about 2 million over the next few weeks. Keeping everything crossed for now

Sonia x

Crumbs, Sonia! Great news that you are on the trial. I hope that everything goes really well for you.

Alison

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