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Not great news today

But I’d already written this blog so here it is Perspective - my MuSh
Sonia x

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Hi Sonia,

Sorry you’ve not had a good day, is it to do with the trial? Your blog is fab.

I too keep getting told I look well, it’s like people expect something visible when they see you apart from the walking issues. Also Lots of people keep telling me I’m being brave, like you say what choice do we have in all this. Maybe they would think differently if they saw my posts here . I even got told by one person that of all the people they know I was probably the one best equipped to deal with this… WTF?

Snowqueen x

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See, I had pole students that I abandoned a couple of weeks before my 1st neuro appointment, plus as a contractor, a lot of my colleagues knew I was taking time off. Privacy was not high on my agenda, I just didn’t want to let people down!

Reactions from other people are sometimes difficult to deal with

Sonia x

Unlike my hair, my stemcells just didn’t grow

That’s the not so good part

Sonia x

X to late I need sleep I tried to read the blog my mind a mush XXX ZZZ Don

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Morning Sonia,

Sorry to hear the Stem Cells aren’t growing that must be a massive disappointment. What does that mean for the trial? Hoping they are just a bit slow to get started and have a growth spurt (don’t know if that’s possible?).

Snowqueen x

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First thing I looked at this morning

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Hi Sonia, another good blog!!!

Very sorry to hear the stem cells aren’t growing. Must be so disappointing… but try to keep in mind that what you are doing is adding to the scientists knowledge of stem cells.

Pat xx

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Sorry to hear that Sonia. Do they know why the stem cells have not grown? Have you started a DMD yet?

I do love your blog.

Moyna xxx

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Oh Sonia, so sorry the stem cells did not grow, do they have any explanation for you as to why they didn’t?

(((((Hugs))))

Pam x

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It’s all run aground… but I’m going to try to speak to my MS nurse, if I can be offered DMDs locally it would make life a little simpler. You’ll know when I start flushing I’m sure

Yes, I did know that one person in the original trial sample, had cells that just didn’t grow shrugs So I knew it could happen. I just assumed my stupid hair growth was a good start. We need scissors to keep the Dyson alive, I have no idea how/why it grows so much!

Sonia x

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It’s all run aground… but I’m going to try to speak to my MS nurse, if I can be offered DMDs locally it would make life a little simpler. You’ll know when I start flushing I’m sure

Yes, I did know that one person in the original trial sample, had cells that just didn’t grow shrugs So I knew it could happen. I just assumed my stupid hair growth was a good start. We need scissors to keep the Dyson alive, I have no idea how/why it grows so much!

Sonia x

So sorry your results were disappointing, was/were there any positive results?

Great Blog

Jan x

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Great blog Sonia, so sorry the stem cells didn’t grow…I’m sure it must be devastating for you…however much we tell ourselves these things are trials I think deep down in our subconscious we really pin far more hope on them than we realize.

hope you get some answers soon,

Nina x

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The trial was using Mesenchymal stemcells, so it’s different to the HSCT treatment, but I’d be even warier about that now!

They’re using blood they took on two occasions for a different trial tho, so I feel like they’ve had some value from me I actually cannot tell you exactly what for, they were after RRMS blood with no DMDs.

​I’m still very glad that the doctor in London thinks, well actually knows, that I have RRMS and wants me to start DMDs. All in, it’s good and I’ve had another fairly unique life experience

Sonia x

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