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@sofyg 

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sofyg

Ocrevus running out

Hey guys, I’m due to have my second infusion of ocrevus next month (so my first one was 6 months ago) and I’m feeling increasingly rubbish! Was on tecfidera previously and felt my usual healthy self but my MRIs showed progression so I was switched to ocrevus. I continued to feel healthy until the ...

@VanBax 

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VanBax

Amantadine

Hi all. Does anyone have any experiences of taking Amantadine for MS fatigue. I am currently taking modafinil x 2 100g first thing each day but still suffer from chronic fatigue in the afternoons. MS Nurse has recommended switching to Amantadine. I’m happy to switch but reluctant to give up moda...

Radiological/clinically isolated syndrom

Hi there I’m from Australia, moved to the UK in 2018. In 2009, following a bout of extended vertigo (originally suspected to be labrynthitis) an MRI found a number of MS like lesions. Neurological examination was normal, and a follow up MRI several months later found no changes. Neurologist recomme...

@HelenJR 

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HelenJR

Unsolicited advisors

Just went to the dentist and saw the dental hygienist. She asked if anything had changed with my health so I mentioned being recently diagnosed with MS. She didn't say anything. AT ALL. For 30 minutes until the appointment was over at which point she launched into a talk on functional medicine and t...

@summy 

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summy

Dr Coimbra's vitamin d protocol

Hi I have recently been diagnosed with Ms and am reluctant to take medication and therefore have been looking into alternative treatments. I feel hopeful about Dr Coimbra's vitamin d protocol which has been backed up by many other doctors such as Dr Berg. I have started taking high doses of vitam...

Have you been a PPI rep on a project?

Hi all I'm hoping you can help. I am speaking about 'Patient and Public Involvement' (PPI) at the MS Frontiers conference in Bath, UK on the 5th July. I'm keen to speak with MSers who have been a PPI representative on research projects... is this you? Are you happy to share your experiences? If s...

The cure for MS for me is travel

I start this year my caminho Santiago. I was afraid always thinking and if a can't walk more that 10km. Well it was amazing day by day I whant more :) I share my croundfounding and in there is all the social media. I beg all the community to share my journey, let me show that is possible for all o...

@DrLisa 

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DrLisa

Hair loss

Anyone dealing with hair loss? I don’t know if it’s because of MS or a medication, but about half my hair is gone.

Newbie here!!

Hello I've been recently diagnosed, I'm still getting my head round it, fed up with the chronic pain, I'm working mum with two kids. My MS Nurse is coming to see me next week. I feel like people that don't have MS don't really get it. If I say I'm tired they say oh I am too, erm it's not the same!!...

Me! As a cartoon! Talking about MS!

Hey pals, here is a video of me talking about my MS pain, and they have animated me!!! Please watch and share as you feel appropriate :) Happy Festive Times xxx https://youtu.be/DD6DCgB1SsY