I know I’m already WAY ahead of myself… I haven’t even been diagnosed with MS yet – but I was doing some reading (I should really stop doing that) and I came across some ‘treatment options’ for MS. They’re almost all injections!! Injections? As in… put a needle in my skin!!!
Oh, no… I could never ever ever ever do that. I’m TERRIFIED of needles. There’s no way. I’d either puke or pass out.
Does anyone take these meds? Do you really just “get used to it”?? What was it REALLY like the first time you had to give yourself an injection? Doctors and nurses tell you one thing – but I’m really more interested in the real stories. The more I think of this, the more I see it as a double-edged sword.
My head is spinning. On one hand, if and when I get an official diagnosis I will be relieved. I know that sounds bad, but I just want an answer already! This not knowing is awful! On the other hand, being ‘diagnosed’ with MS is never a good thing. I need to stop getting ahead of myself and just take it day by day, but that’s so hard to do sometimes. I feel like this has consumed my every thought lately. I think I’m just venting, because nobody else “gets” it. Thanks if you’ve gotten this far.
You are sounding like a horse who has bolted in sheer panic…deep breaths.
Yes the DMD you talk about are all injections and many people on here are at various distances down that road.
I myself am about to start. Having a dx of ms does not naturally mean that DMD are the next step.You have to meet the mc Donald criteria before they become an option and even then you can choose not to take them
I am not computer aware enough to give you the criteria but if you look at old rizzo posts she has explained it many times in laymans terms.
I can understand you all consuming desire for knowledge and the MonSter thoughts following you everywhere as im a newbie myself.
If/when you do get a dx there is usually plenty of time between appts to re set your default mode as the very nature of the condition means you are constantly learning the new you . At the point of DMD becoming an option if you are anything like me you will be so fed up of your body misbehaving that the wanting to be proactive in trying to rein the ms in that you will willing jab yourself.
I was shown all the different ways to inject last week and there are various different pieces of equipment that mean you dont see the needle at all.
Try not to panic and take care
Pip
Hey Heather… it would depend on how your MS was I guess… there IS the new treatment… which I believe is oral but from what I read, most DMDs are quite specific as to exactly which person with which presentation of MS is allowed them. So it would depend on what happens with your dX.
I did the same as yo and read up on all the treatments and even though I wasnt too pleased at the thought of regular injections i didnt mind it too much… but it turns out I will be having a 4 weekly drip thing at the hospital anyway! 4 weekly done by someone else is much more favorable to me than daily by myself!!
Think positive thpoughts! 
Hi Heather
How you’re feeling is perfectly natural, it’s a scary business and it is difficult for others to understand and no, they don’t really ‘get it’ at all, so you vent away at your hearts content because that’s what we’re here for.
I think most people going through the throes of diagnosis feel the same way: wanting a diagnosis to put the ‘not knowing’ to rest but at the same time not wanting to know… I’ve said it many times before and I still think the same - it’s a double edged sword.
As hard as it is try not to worry too much about what may or may not be, because at the end of the day it won’t help and it won’t change anything either. Having said that ‘not worrying’ has gotta be one of the hardest things to do but real easy for others to say!
Take one step at a time and don’t fret over the self injecting - if it does come to that you’ll have training first and can use an autoinjector which makes things so much easier.
If reading up on things and googling makes you worry even more then don’t do it - wait until you know for sure what you’re dealing with.
Take care of you Heather
Debbie xx
Hi Heather
How you’re feeling is perfectly natural, it’s a scary business and it is difficult for others to understand and no, they don’t really ‘get it’ at all, so you vent away at your hearts content because that’s what we’re here for.
I think most people going through the throes of diagnosis feel the same way: wanting a diagnosis to put the ‘not knowing’ to rest but at the same time not wanting to know… I’ve said it many times before and I still think the same - it’s a double edged sword.
As hard as it is try not to worry too much about what may or may not be, because at the end of the day it won’t help and it won’t change anything either. Having said that ‘not worrying’ has gotta be one of the hardest things to do but real easy for others to say!
Take one step at a time and don’t fret over the self injecting - if it does come to that you’ll have training first and can use an autoinjector which makes things so much easier.
If reading up on things and googling makes you worry even more then don’t do it - wait until you know for sure what you’re dealing with.
Take care of you Heather
Debbie xx
I swear on whatever you like - without my glasses I can’t even see the needle with Rebif! It is encased in a little plastic cup which fits on bottle of the snazzy autoinjector thing (the “Rebismart”) so that you don’t see it unless you actually look for it. Then it’s so fine it’s virtually invisible to me! What’s even better is that, because it’s so fine, you hardly feel a thing
The best thing of all though is that it means I am FIGHTING BACK! Take THAT MS!!!
Injecting is actually much much easier than most people think. Little kiddies with type 1 diabetes do it multiple times a day after all.
If you need an injectable DMD in your future, but you simply can’t do it, you can get someone else to or maybe get it done at your GP’s surgery. There’s always a way
Karen x
Hi, you sound just like me…all you want to know is what is wrong with you, yeh?
I am still seeking an answer to that. I did have an answer for a few years, then some jerk of a neuro decided it was something else and upset the apple cart, which has not been the right way up since!
Hope you get some answers soon.
Think my hubby is fed of hearing it…but not as fed up as me having it!
luv Pollx
Hi Heather
I am currently taking avonex which is a weekly injection, i hated the though of having to inject myself. I used to faint when having to get bloodly tests etc. But to be honest i have been great, i think when you realise that the medication is going to help you, you will do whatever it takes.
To be honest it’s all done without thinking. Apart from some problems with my hands I have found it easy and part of my life for the last few years. It rarely actually hurts. The one place I was dreading injecting was my stomache and that has turned out to be the easiest and most painless.
I belive there is an oral drug available now but you do have to fit the criteria.
Try not to worry, it’s much easier and painless compared with other people injecting you.
Wendyxx
Just wanted to add my experience - I’ve been injecting myself with Copaxone every day for the last two and a half years and it very quickly became just part of my every day morning routine - no more worrying than cleaning my teeth or brushing my hair.
It comes already measured out in pre-filled syringes - I was given an auto-injector when I was first shown how to inject, but I quite quickly stopped using it. If you’re worried by needles they’re probably very useful because they mean you don’t really see the needle, but personally I felt it slowed down something which I wanted done as quickly as possible (I never have time to spare in the mornings!!).
My advice would really be to try not to worry about it - by the time you get to the stage of actually injecting, you’ll have been taught exactly what to do.
Best wishes
Maisie
Thank You… I just needed to get it all out – all of those things that swim around inside your head, but you don’t want to vocalize. I’d never tell my husband just HOW worried I am about this, becuase normally HE is the worrier and I am the level-headed one.
The more I try to convince myself that this could not possibly be a reality, the more my body tells me differently. Every symptom I have is consistent with MS, after all these years of being “non-specific” and diagnosed with so many other things (endometriosis, PCOS, IBS, depression – yes, these have all been diagnoses I’ve been given). Only 1 was ever confirmed (endometriosis) and the rest are speculative. Up until now, I’ve felt like a hypochondriac, but I also know that my symptoms are real – they just never seem to appear when I need them to (i.e. in front of the doctor).
Nobody ‘wants’ to have this disease, but at the same time, nobody likes not knowing why their body is rebelling against them. Double-edged sword, for sure! I’m so glad there is a forum like this for people to express how they feel without judgement. It’s a rarity, and I’m grateful for it!
Depends what type you choose. I use Betaferon and that does have to be mixed, it’s very simple though and the nurse will show you how. Belive me, If I can do it then anyone can.
Most of the others come already mixed and are kept in the fridge I belive. Your nurse will help you with the decision and a nice nurse from the drug company, in my case Bupa, teaches you how to use it.
Good luck
Wendyx
Yep, it’s beyond ridiculous, but there you go.
You are absolutely right on two counts: one, you need to take things one day at a time and two, this is very difficult to do.
But have faith. Whatever you find you have to deal with, you’ll deal with it.
Alison
x