Forum

Apprehensive

Hi All

Feeling a little Apprehensive today as this week I start on DMT ,not so much scared but a little emotional as its a kind of submission to this sodding monster of a disease.Is this normal , I hope the feeling passes but I must get it into my head that it will help me in the longrun(hopefully)

Emotional stress will just send my symptoms into overdrive so must be careful i know but I,m finding it all a bit tough at the moment, oh well .....

Debs xx

I can remember oh so clearly when I started on Copaxone. It was 5 years after I was diagnosed and was almost like being diagnosed all over again. It made everything real; I couldn't deny the MS any more.

 

The good news is that using Copaxone was such a doddle that I soon got over it plus it kicked my relapses into touch and I was relapse free for more than 3.5 years :-)

 

It really helps to think of using a DMD as fighting back. It's really not a submission. In fact, it's anything but! Not long after that 3.5 years ended, my neuro took me off Copaxone. In the crazy 15 months after that, before I started finally on Rebif, I had back to back relapses. My EDSS score went from about 1/1.5 (virtually normal) to 6 (needing a stick to walk). If I could go back in time I would do absolutely anything to stay on Copaxone. It may not have been working as well as it had been, but there is no way I would have had the awful time I did without any defence against my MS. So, every time I do that Rebif injection, I am thinking "Take that you ********!"

 

Good luck with your DMD. It will get easier; give it time. Remember, you're fighting back!

 

Karen x

 

 

Hello Debs

Big week for you there!  I was diagnosed before DMDs were available on the NHS so there was nothing for the first few years and I had relapse after relapse.

Then all the campaigning finally paid off and we could get Interferon/Copaxone. I was back at the GP to be referred to the neuro so fast.......! I chose Betaferon and couldn't wait to get started on it. The only emotion was excitement, to slow down those flippin relapses. I'm still on it now and it's reduced my relapses to less than one minor one a year and I hardly need any time off work for that.

The thing is, to chuck everything we can at MS because it's a big one so we can't afford to mess about with it. There are other alternatives around now such as Tysabri, and more coming online, but for now you're doing the very best you can to combat your MS. Along with exercise, a healthy diet, plenty of rest (my favourite bit, that) and keeping worry/stress to a minimum.

Best of luck when you get started, let us now how you get on and if you have any questions do come and ask. You'll be fine, and if you get any fluey side effects don't try and be brave, take paracetamol or similar while it lasts.

 

Val

As a PPMSer I must say that I sometimes feel envious of you RRMSers who can take something to stave off your progression. The MS specialist who diagnosed me recently basically said that there is nothing to be done for PPMSers and that my MS will only get worse. Well thanks a bundle pal, you know how to keep someone’s morale up!

Many people on here talk about how they benefit from LDN and I may give it a try but the specialist was negative about it. I intend to ask my GP about it and hope she might be a bit more helpful. I don’t like the idea of taking it without the approval of someone in the medical profession.

Anyway, good luck with your DMDs Deb!

Teresa xx

hi,

i can relate to your frustrated feeling of wanting or knowing you should be happy but just not feeling it at all. Try not to get too frustrated with yourself and allow your feelings to come out, maybe have a good rant to a friend or see a counsellor for a few sessions to get it all out of your system, leaving space for you to feel more focussed and positive. What your going through sounds challenging and your allowed to get down and p!ssed off about it! I too keep telling myself 'this isn't happening, any day now it will go away' because acceptance to me too feels like submission. 

Really hope this goes well for you and you soon start to pick up in strength and energy again :)

amy-x-

Hi Karen ,Val,Teresa and Amy

Thank you for your positive comments its easy to feel sorry for myself but I must not let this bloody disease win , I will have to think like Karen and use my DMD as a fightback, well done with the campaigning Val you helped to get the ball rolling for us all,Teresa im sorry to hear what your MS specialist said to you I hope things go ok for you,Amy its good to hear that someone thinks a little like me its all very frustrating I feel like MS is winning its little battle at the moment but I have decided that enough is enough I will get on top of all these horrible symptoms The Fightback has begun lol....

Anyhow Thanks again for all your positive advice I will take it on board and Betaferon and I will fight this sodding disease together.

Debs xxx

Try to hang on to that positivity Debs, it will get you far battling this MonSter!

Teresa xx