Last reply 9 months ago
Stem cell spms

Hi all

Me agaim . 4am i woke up and my thoughts sre on …. stem cells

I am upset, yes. Upset by doctors still focusing on newly diagnosed patients only , they say or excuse themselves saying they can not measure improvement in walking on us spms because we no longer walk . That is such rubbish excuse. When you have spms and Every Day you are getting worse and loosing things you could do earlier OF COURSE we have sth to measure . If you give us a treatment we can INMEDIATELY see if this beast stops and it won’t take long. I look back and l have lost so much in only 2 years….so much….I cannot stop thinking if last year when i went to Sheffield had i been into that b…. trial my live could have been better……,sorry for the rant but i find the whole thing upsetting….

Tyred of living in “hope” all the time

Xx

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mmhhpp
9 months ago

And we are the most vulnerable whose cost is much higher Think about money that goes on carers every year totally ridiculous….like someone said here we will be absolutely hopeless soon then we will not fit into any treatment……


stumbler
9 months ago

@mmhhpp , being “in a similar boat”, I can understand your frustration.

Unfortunately, it’s a case of almost common sense. If your car had a major fault, would you pay a mechanic upfront to “try” and fix it? If he fails, it would be a complete waste of money.

That’s the way NICE and the NHS work here in the UK. They have to base decisions on getting value for money, rather than taking gambles.

I know it’s harsh, but until there’s some guarantees of a successful outcome for us, it’s just not going to happen. Unless we stump up the money ourselves, like Caroline Wyatt (BBC) :-

http://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis


rachaellouise
9 months ago

@mmhhpp

I can see your frustration . Your right too none of us should feel forgotten about and not cared for. We all matter , your voice is heard and listened to so here is a great outlet .I think their will be other outlets for our voice to be heard in the future.
I understand the anger , I’m not progressive but I understand. We all have our own battles .

Please don’t let the stress get to you and be losing sleep . Both are bad for you .
Could you distract yourself ? Deep breathing aka meditation works. Keep it up and it changes brain waves so you feel calmer and more in control of thoughts . I use the app calm of their is headspace
Also you could try a audio book, read or watch tv.

Rachael hugs 💋❤️🙏

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