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.

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