Hey everyone, I feel really desperate right now as a feel so disconnected from my own body. My eyes focus (double vision), my legs won’t support me and I have puns and needles in the soles of my feet. My symptoms have never been this bad before and it’s really scaring me. I feel as though I won’t get better. 3 years ago my symptoms got really bad and I was relapsing nearly every 6 weeks, my MS was very active! After trying beta interferon, avonex and copaxone it was decided ghat a move go tysabri was required. And up until now it’s been fantastic. No relapses. Then 6 months ago, the foot drop in my right fool go worse (I’m unable to pick it up at all now) and I started to feel more fatigued. Since then things have just got worse. Now all I do is sit at home in the same spot all day. I think on top of everything else I’m scared and depressed. I’d this it for me? Has the tysabri stopped working? And if it has is there anything else? I just wanted to know if anyone has had a similar experience and has any advice for me. I see my friends going about their daily lives and would do anything to have a tiny piece of what they have. I was diagnosed at 18 and have always tried to keep a positive outlook. Now it just feels like what’s the point. I feel like giving up and just taking whatever MS has to throw at me. Donna x
Hi Donna,
It can be so scary when the MS behaves unpredictably but sadly it is the nature of the beast 
It sounds to me like you are having another relapse at the moment. Or maybe you have a mild UTI causing a flare up of your symptoms in response to an infection. Have you rung your MS Nurse? If it is a relapse can you try a course of steroids to hurry things into remission again? And if it is an infection you may need some antibiotics. But there are definitely things you can do to improve things.
Have you ever been referred for neuro-physiotherapy? This can make a huge difference in regaining lost function and improving strength and muscle tone. The physios could also assess your drop foot and help with a splint etc so you can walk better with it.
You mention feeling scared and depressed and it is no wonder. MS is such a hard disease to live with. It keeps stealing bits of us and just as we get used to one set of changes, things alter again and we have to go through the whole loss and grief process again.
Your last paragraph where you describe your friends going about their lives and you say you feel like giving up does sound to me like you may be depressed. MS can also cause depression as an actual symptom just as it can cause double vision quite apart from the fact that it can be a depressing condition to live with. Sometimes anti-depressants and counselling can work wonders in helping to get things back on a more even keel.
I don’t know that the Tysabri has necessarily stopped working. Tysabri doesn’t promise a 100% reduction in relapse rate. Rather it has been shown to reduce relapses by 68% so the fact that you may be having another relapse does not mean the Tysabri has failed you. It HAS reduced the frequency a lot from the 6 weekly rate that your were having, right?
Please ring your MS Nurse about getting checked out to see if some steroids might help and ask her or your GP about some anti-depressants and some counselling too.
I really hope you feel a lot better soon,
Belinda
Hiya Donna
Belinda has said it all really, and you have managed to remain positive in the past so you can do it again.
Please take Belindas advice and contact your MS nurse, and get a test for a UTI, if it is an infection you will feel better in no time.
I can only add we are here to support you and I hope the medics can do something to help you.
Take care
Pip
Hi, I have nothing to add to previuos posts but hope you get some help.
Best wishes,
Jon.
Me too, previous posts are invaluable, Belinda and Pip are a mine of ‘hands on’ information, listen to them and learn my friend, I did and it helped me big time. These people know what they are talking about…
Keep your chin up
Suex,