Disease Modifying Medication

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Hi All

My partner spoke to my MS nurse yesterday. She said it should not have been left to us to check out all if this medication. As my consultant was off i saw one of his colleagues. He should have given me info about the 3 most successful drugs being used. And explained about all if them. So she is sending the Info out to me. So I can make a decision as to which I would like to try. That is such a relief. As my partner and mum did not want to choose the wrong drug. Thought you'd like to know. As it was quite scarey. Oh and I'm still waiting a date for my tribunal. But I'll let you know how it goes.

Mark XX

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7 Replies

  • Posted

    Well I'm really pleased to hear that you and your family are not going to be responsible for choosing the meds Mark, that must be a relief for you all. x

  • Posted

    Hi Mark,

    You wouldn't believe the numerous drugs that have been prescribed by my doctor, for my wife to administer in me.

    About 14 years ago, my wife was given a prescription for some type of drug that neither of us had ever heard of. When we handed it in to the Pharmacist, she immediately asked my wife if she had been on a course to administer valium via injection. My wife said 'no', and the Pharmacist contacted the doctor responsible for the err. It was changed to the suppository type, which was normal at the time.

    However, suppository types have been changed to an oral version - because more people were being taken to A&E with rectal damage from the suppository type.

    The oral type I have to be given now, after about one year I've been on them. One paramedic asked my wife if she had been on the course to administer this type of drug. Again we are left in the dark, and the paramedic was correct, after we looked in to it more.

    Good luck Mark with your Tribunal, I'm still waiting for my DLA to PIP transfer.

    My health is very complex, and what I suffer from is rare.

    I have had it since 22 and now I'm 54, its like living a very painful "silent death" sentence except you cannot die from it. It's progressive and has reached the point now where I'm unable to walk, but being on 40 tablets a day, is having major side-effects with me eating, I cannot swallow properly so I'm forever choking on food. My saliva glands do not produce enough saliva, even with artificial saliva spray, fails.

    I guess it's back to the doctors again, even though they have to be very careful with introducing me on new medication.



    • Posted

      Hi SteV3.

      You've really had a rough ride throughout the years. My mum works in mental health so is aware medication training for everyone is a must. Especially when drugs are administered by injection. Although it is as important with oral medication. Some are really scarey. Well done to your wife for helping you with all if this. I'm lucky I have a lovely partner and family. This MS has taken away my shirt term memory and some days I cannot remember much at all. Hence I talk a load if rubbish some days. But as my lot know me so well just laught at me. I cannot go out on my own now due to forgetting where places are and why I'm going. So always have mum dad and my partner to rely on. My balance isceffected and i look drunk most days . But i don't drink at all.I'm 36 in a weeks time. And know this will progress and I will eventually not be able to do mist things. But am willing to give these drugs a go. Even just to stop the amount if relapses I'm having and the fatigue is horrendous.

      Good luck with your change over to PIP. Hope everything goes in your favour.




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