No Emeli Sande

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I read a post today which said “MS isn’t for the faint hearted….. it’s tough, life changing and Msers have little choice with their fate” (thank you Kate).

Today, my choice was to stop disease modifying treatment. I know the risks of not taking disease modifying drugs but I need a better quality of life, enough is enough, I can’t carry on, for me, especially for little man. My nurse has said “I’ve got the option to stop treatment” but the ball, like any medication, is firmly in my court.

With most things, we are conditioned what to do. Not with MS I feel.

Like Emeli Sande, I do want to ” scream, shout, put it in all of the papers” mainly because I feel so alone, I so wanted results and just want everything to go back to pre MS. But I have a chronic condition. No amount of pity partying is going to change that. Feeling and looking drunk maybe an option but I’m going to see if without the drugs, things improve. Debating whether to stay or go, is a recurring thought process. I really think the drug is making me worse than before. “Give it a go” “what have you got to loose” my nurse said to me nearly a year ago. I think I’ve given it a go. Little man is snooze cruising, think Mummy will too.

#emielsande #ms #multiplesclerosis #treatment #dmds #drugs #muMSuk

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9 thoughts on “No Emeli Sande

  1. I’m glad you’re taking responsibility for the care of your body!
    I’ve been tempted by disease modifiers since the 90s but never went there. I wasn’t overly impressed with the name for a start!
    If I take a drug I want it to do more than ‘modify’ things.
    What treatment choices will you be making now?

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    1. Sorry for such a late reply, not been great but when I’ve got a blog! Not been great, so sorry. I’m not sure what I’m going to do especially as I’ve got a neurologist appointment in a few weeks. I was on Tecfidera which was sold as the tablet. Before that I was on coproxone. Both made me so ill. So don’t know what to think? Apart from your words, do you take anything?

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      1. hi, hope it’s just a seasonal blip for you. Do you find changes in weather have an effect?
        I know I couldn’t deal with heat at all but after angioplasty (CCSVI) the blood leaves my head more quickly and I ahven’t had the same overheating issue.
        I did that 4 years ago and 20 years after diagnosis.
        I’ve been taking LDN for about 15 years and a stack of various supplements but nothing else.
        I still have MS but I choose to believe all these things make/have made a difference to my body working?
        http://www.chronicalternatives.co.uk/2017/05/continuous-improvement-marginal-gains/
        You could ask your neuro to point you toward the good data on DMDs cos you’re a bit confused?

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      2. Hi Daisy, heat does have an impact even when I come out of the shower. I’ll look at your link, thank you. Thank you regarding your tip. I’ve got an appointment in a few weeks and this is on my list of questions.

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      3. many things are connected to blood flowing poorly,

        Hypoxia: Our brain is literally starved of oxygen because the blood doesn’t leave our head promptly enough, meaning the fresh oxygenated blood can’t get in there quick enough.

        Overheating: has been theorized that the blood in the brain doesn’t flow freely which can set up a situation like your ‘puter overheating and shutting itself down if there something has become pushed against the fan?

        These are both only theories but ask your neuro if they make sense to him/her?

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