Tag Archives: dmds

Name change

13 Apr

Not sure if I like it but for now it is all I could think of.

I took my usual Monday afternoon Avonex injection and I feel like crap right now.  Some weeks are better than others but today isn’t a good one.  I have a love hate relationship with my drug of choice, I am so lucky to have any drug that is fighting it however little % effectiveness but I hate the way it makes me feel and the pre-injection anxiety.

Something that I need to get off my chest is the current theme among MS patients is this, if your MS doesn’t have progressive in the title, then you aren’t progressive.  I am very aware that MS can be more progressive in some people but I do take umbrage at the suggestion that relapse remitting is some sort of golden ticket in the MS world – it isn’t.  We all progress, if were weren’t, then why take disease modifying treatments?  Are they not taken to help slow progression?  Did someone miss that bit of information?  Why are the MS organisations not doing more to correct this?  This is playing right into DWPs hands (following on from yesterday).  During my assessment, she said oh you have RR like that means fine.  We have treatments therefore we are fine, right?  No, wrong.

I really don’t know from a general society point of view that the types of MS are helping us at all.  In a lot of ways I wished the types were behind closed doors for the medical professionals.


Help is coming (but has sent me crashing)

5 Mar

I have been having a lot of trouble deciding which DMD to start and I mean A LOT of trouble.  Decision making has never been a strong point of mine but this is a nightmare.  Its a no brainer as to whether to start them but which one??  They all sound horrendous, chinese hamster ovary, human serum of some sort and then the other which causes big pot holes in your skin which are permanent!!  Not much of a choice but at least I have a choice, I am very grateful for that.  Superman cape still intact on Neuro!!

This morning I got a call from my MS Nurse.  I was relieved to finally speak with her and she said she can help with my decision, great!!  yay!!  So why then, when I came off the phone did I feel like crying myself into oblivion?

It really hit home when I spoke to her that I am really ill.  You would think that the diagnosis from Neuro would have been it, no not me, it was the friendly nice nurse who upset me.  She sounds like the shoot from the hip kind of woman and that is my kind of woman.  I need people like that always have done.  I like to know where I am and I cannot stand wishy washy people who are too scared or polite to tell it like it is.  No time for that with MS, I need honest facts so I can deal with it.

I cannot believe since looking at the DMDs how blumin vain I have become.  I was sure Copaxone was the one for me but I just have not been able to get over the lipoatrophy.  This causes the fat cells to be destroyed leaving big dents in your skin (injection sites).  Why can’t I get over this??  So, I think I’ve narrowed it down to between Avonex and Rebif.  Now with this, I am petrified of the liver problems.  What I need to ask the Nurse is, if the liver levels become abnormal, if the drug is stopped does the liver return to normal or is the damage permanent.  If the liver can repair itself once off the drug then I think it will be Avonex.  I will be nervous but I can handle the injections, I have given plenty to animals and although it will be different as its me, I am not nervous or wobbly around needles, so I am hoping it will help me.

Trouble with Copaxone is the skin problems are permanent and the way I see it right now, I am not ready to ‘see’ how ill I am.  It would be a constant reminder of what is going on on the inside.  I don’t want to look damaged on the outside just yet.  I am just not ready.

I say all this and then something will come along and make me wobble about them.  I have been on MSDecisions website numerous times and everytime the results come up:

Avonex, Copaxone, Rebif.

Which one?  Any thoughts, experiences most welcome.  I would be very grateful.