This is a purely a self indulgent moan that I need to offload somewhere. Been dx with rrms since jan 13. Started on rebif which did not go well, felt like I was dying everyday for 3 months! Also had a relapse so eventually 2 months ago was switched to gilenya. Things seemed to be going well, bit breathless and lost a bit of hair. Then I got a throat infection, so had some antibiotics and felt a little better. Then I started another relapse which was treated with steroids. Three days ago started to have severe chest pains so gp sent me to hospital. A myriad of tests over two days revealed a pulmonary embelism on my lung. So now injecting a anti coag drug and starting on warfrain. Back and forth to the hospital twice a week for the next 6 months. No idea what may of caused this, don’t know if it’s connected to ms? Been told by neuro to stop the gilenya, so may well relapse too. I have two young children to look after (4&6), a husband who works 40+ hours a week and I just don’t think I can take much more. Oh and it’s my 30th birthday in a couple of weeks!!! I’m starting to really understand the high suicide rates in ms patients. Not going to do that myself, have my kids to live for, but I feel so miserable and like a prisoner to my own body. I know it could be worse and I’m lucky I got treated early but it’s never bloody ending. If you have read this far I apologise for the self indugelnce but don’t feel I can burden the family with my woes. Ssdd x
Thats what this site is for i feel unburden your self here and there is always someone who will reply back , sometimes just makes you feel a bit better writeting down and getting things of your chest i am sure your family wouldnt mind you talking to them about how you feel thats what family and friends are for .Take care of yourself and have a moan anytime. Katy
Life’s a bitch sometimes so rant away, if you have to come off Gilenya can they not try something else (tysabri ) maybe . But if you need to scream, shout,rant , that’s what were here for. Take care Gray
Funnily enough just had a call from the ms nurse, the neuro is considering that as an option. I struggle to talk about this stuff at home as I don’t like the pity looks and the fussing! But it’s better out than in, so thanks for indulging me.