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Multiple Sclerosis Trust

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ProfilePosted byOptionsPost Date

maggiewinchester

maggiewinchester Report 3 Jun 2017 00:40

My nephew has MS. He was first diagnosed 20 years ago, whilst at University.

When a girl he knew found out, she recommended he went on trials for a new drug treatment - she'd been on it a year and found it amazing - the drug was so good, no-one realised she had MS.
Sam did as she recommended.
I'm not sure whether the drug was Beta Interferon and/or glatiramer acetate, but it was later withdrawn due to costs, but because he had been on the clinical trials, Sam was allowed to keep on having it prescribed on the NHS.

However, when he said he intended going out to work, questions were asked - because, apparently, the drugs would be delivered to his house - and he had to be in when they were delivered - therefore he shouldn't work!! :-S
He got them delivered to his gran.

He's now 40. Still working. Occasionally uses a stick on his 'bad' days (very few and far between - he smokes cannabis when he knows a bad day is coming - and he knows this improves the problem before it really starts).

He got married 3 years ago, now has a lovely 2 year old son. :-D :-D

There are already drugs to help, but they're very expensive - or perhaps the drug companies charge what they like :-|

Researching:
Henry Floyd (g x 4 grandad) Allegedly the heaviest man in England in 1842

supercrutch

supercrutch Report 2 Jun 2017 15:45

Thanks Vera :-)

My eldest daughter was diagnosed aged 18.

Researching:
Jones!!!!!!!!!!!!!!

SuffolkVera

SuffolkVera Report 2 Jun 2017 15:39

With a rellie on my side, a rellie on OH's side and a friend with MS, I am happy to offer support.

<3

supercrutch

supercrutch Report 2 Jun 2017 14:44

Thank you both.

The clinical trial results hadn't been made public as of Jan this year for Ocrevus.

MS treatment drugs are in one of the most expensive groups to prescribe.

No two neurologists seem to think the same way re treatment due to the associated problems each medication may cause.

It is nigh on impossible to be accepted onto the cannabis trials although this treatment seems to be the a) easiest b) most tolerated c) cheap d) easy to manage the control groups.

All I know is that I want a cure (not feasible) however, at least a drug which will halt further progression.

Researching:
Jones!!!!!!!!!!!!!!

Mersey

Mersey Report 1 Jun 2017 23:32

<3 <3 support and love

Researching:
#Be Kind

supercrutch

supercrutch Report 31 May 2017 17:51

Today is World MS Day and we need your help to make sure that a #lifewithMS for children and young people doesn't have to be a life defined by MS. Text KIMS21 £5 to 70070 and help us develop resources, tools and support for everyone affected by MS


Close to my heart

Sue x

Researching:
Jones!!!!!!!!!!!!!!