Is There Anyone Out There?!
Today was my appointment with my Neurologist.
He was running an hour late, which in crazy mind land is fine, we know there worth so we wait.Had it of been at the GP’s I would have been first to complain.
Funny that.
I went to discuss my treatment options, in hope I could make a real informed decision I was hoping t leave with a clear head and with the right choice made. Never have expectations where MS is concerned.
I have left feeling more confused when I went in.
I have the chance to see my amazing brain. I also had the chance of seeing my old and new lesions. It freaks me out to think how long they were there, doing there damage without me knowing.
I have three options. Try the weekly injection, an interferon based drug which has no risks but some fluey type side effects.
Next its copaxone, a different daily injection, which is not part of the interferon family however poses no real health risks.
Last is stick to tysabri, the monthly infusion. Yes it works, however it comes with health risks of its own. PML which could essentially kill you, someone has the be the minority, right? Next is the unknown no-one knows the effects further than five years, no-one knows if it has a shelf life. Then its the kidney infection side effects, I hate those. Last is the cannula bit. I have really poor veins, from years of prodding and poking.
All these things along with the girls and me mentally not being ready to face up to the fact I have to fight. I have to live with whatever choice I make, I have to live with the what ifs.
Also each treatment opens a door. The interferon, should it not work would mean I would be eligible for the new tablet. The other two both lead to tysabri.
I am confused and frustrated with my confusion. I am lost and I don’t know where to turn. At the end of the day its my body and I hate the fact I have to pump it full of drugs for a semi normal life.
That’s another option in itself, nothing. Let it be,see what happens.
Whatever road I take it will change me, I will have to acknowledge the fact I have multiple sclerosis.
Any comments welcome.
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4 Responses to Is There Anyone Out There?!
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I have now for 4 years lived with the risk of PML. We said no to Tysabri the first year I had MS cos we were scared but the 3 injection I took a week did nothing and I had relapses every 6-8 weeks. I started Tysabri and it changed my life, our life!!! I know the signs to look for if PML should show up, we been told by the nurses and doctors how to spot them in time then it can be treated. My husband do too and we would rather react too quickly than not at all. I’m not scared anymore and I’m only reminded of my illness every 4 weeks. Hope this info can maybe help you decide:)
I sometimes think that if I had said yes to Tysabri straight away my legs might not have been so bad and maybe I didn’t have to use a stick but no point in thinking like that, I know!!
Hope you find the right choice for you and your family! Do ask if you want more info:)
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Mette recently posted..How exciting…..
Thank you lovely. Do you still have the bad days? I just want to do what is for the best and although I know its the best it holds the most risks ut I suppose life if about risks x
I don’t really have bad days, not more than any ‘normal’ person had maybe even less! I have had 2 relapses in 4 years so for me it’s the way forward but we’re all different. It’s important to listen to your gut feeling and choose what makes sense for you and your family:) i know you will:)
Mette recently posted..How exciting…..
Thank you lovely. I made my choice, and I know its an odd one but I jut need a break. I need to get myself together xxx