Scared, i maybe too late for dmd's ?


im scared as my m.s is quite agressive and my recent brain scan showed a very large amount of white matter lesion load.

they want to see if can trial me on a dmd but theres a big part of me who is not only needle phobic and scared of having blood tests every couple of months. but also the fact putting myself through any of that could very well be too late anyway as has prob moved on to spms phase .

i am so confused and scared and have already mental health problems. which ive asked if were caused by the m**.s but my** cpn thinks i would have had them anyway and m.s is just making them worse. oh my life is really tough.

ive already made about 7 sui attempts and am chronically suicidal.

i dont know what to do for the best any advice be helpful thankyou.


Hi moo,

That’s tough, really tough.

I think you’re really brave just to come on the forum and ask for help.

MS is scary enough at the best of times, so when you get a double whammy like you’ve got, it’s difficult to know where to start.

I don’t think that MS is related to any mental health issues, so don’t get the two mixed up.

If you really would like to try this DMD check with your MS specialist if it’s suitable.

If it’s the fear of needles that’s the only thing stopping you, you’ll have to ask yourself if a bit of nastiness is worth the potential benefits. But unless you try, you’ll never know. That’s where being brave again comes in.

Keep in touch moo,


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hi moomoo

it doesn’t have to be an injection.

tecfidera, gilenya and aubaggio are all tablet forms of DMTs.

i have just read an amazing book called Reasons To Stay Alive by Matt Haig which may be helpful to you.

as john says ms and mental health issues are totally separate.

please speak to your ms nurse or neuro about DMTs.

please take good care of your self.

have you tried mindfulness meditation?

it is really amazing at keeping you calm.

talk to your CPN if you feel suicidal, you are important in the universe and have people who you matter to.

you matter to us lot on here too.

wishing you love and a peaceful mind

carole x

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Hi Moo

Im really sorry u are having such a tough time. Until my MS symptoms started and kept getting worse (last year), I had never been depressed in my life. Now Im also battling with suicidal ideation. Please hang in there Mo. Depression does get better. Its seems like it never will, but that is just the depression talking I think. I have found that mindfulness helps, along with trying to get busy again, seeing friends, and exercise. Please PM me anytime if you think chatting would help. And please be kind to yourself an dont hurt yourself.

In addition, I have been on a website which provides peer support for ppl who are feeling depressed and/ or suicidal. Ive been visiting the site for a few months now and have never known anybody be anything but incredibly kind and supportive to each other. Atm there are 15 ppl in the chat room, just chatting about anything. And, strangely for a depression web site, there is a great deal of humour and “laughter”. I usually come away having had a good chuckle and feeling that my new life with MS is a bit more bearable. It is a very pro-life site and is carefully moderated.

But when you first see the name - “suicide forum” (Suicide Forum - Live Chat & Online Support for Suicidal Thoughts & Emotional Distress) you can think that it is something sinister! Its not, its 100% pro-life and is committed to helping ppl get through dark times and build a better life. It is also extremely welcoming to newcomers. So please pop along if you think it would help. Funny thing is that Im quite left wing, and many of my friends IRL are left wing, but Ive struck up a brilliant friendship with a pretty right wing person on the website and we are planning to meet up for a pint and a good political argument sometime. Damn, I cant post the link. Anyway, you got the name.

Look after yourself Moo. MS is a complete f*****, especially when it comes with or brings on severe mental health problems. But as the days from my diagnosis (last week) pass, Im starting to think that my goal now in life is to show me and others what I can do despite the MS, 8 loud tinnitus noises, flashing lights, muscle pains etc. Please try and think about a positive future. Its hard I know. Sometimes I feel complete and utter despair. But there is hope I think

Bestw sihes

I did post the link. Its in the third para,

  • Well honey try and keep positive life is so precious.we the "elite"have to the show the world that we can handle any thing that thrown at us.keep chin up and head saying this just now but tomorrow is another day we all feel for you.lots of hugs coming your for white matter I was told last week that I have 4/5 New lesions since my last m r I and my m s is active but had hope when my m s nurse got My d m d started in don’t worry things will take a turn for the better.there is they say light at the end of the tunnel don’t tell yourself the meter has went out


thankyou everyone forr your comments and kind things you have said. im feeling preety bad still but im sure ill be ok.

hope your all as well as you can be.

moo x