Forum

Its hard to accept the treatment

Hi everyone, I am Arabian living in UK. Never joined a forum before so if I’m making any embarrassing mistake pardon me. I just feel like talking about my MS with people who are struggling with the same day to day worries and see what the peple who care about this think about my MS. I am 25 years old I’ve had this illness since 2005 I was a bit young I lost my eye but it got healed I could say 95%. MS never tried to mess with me till 2010 before it started again I was on Rebef I started rebef 2009 to be syptoms I was emotionally stressed also, it was dizziness started and it got healed 90%. then tiny symptoms tongue less sensation in hands clumsy walk etc all got healed 100%. I tried all interferon rebef my health was getting my health worse it simply work I’m off treatment 3 years now and my health is on the top except fatigue MRI scan shows that MS is sll over brain and spinal cord, doctors recommend that I start gelena or whatever its called i forgot sorry. but i’m wondering should i really put more chemicals in my body in this age? wouldnt it make my life shorter would it actually work ehat if it didnt i start another? and thats what i should do to my body im not disabled " yet " im working 8 years and still my health is fine. many question marks in my head should i or shouldnt i i know worrying id no good for me im even losing weight in scary way 44 kilos before MS i was 60 last year 52 im sorry if annoyed the reader much about me me im really sorry i just dont know anybody in this country and i wanted to let these worries out even if virtually. Best regards to all.

Hi, I cant advise about the rebif, as I have never taken it.

But I am wondering if there is an MS society near you. Just try to search for one by typing MS branches in..... wherever you live.

There you will find people who understand you.

You will find friendship and support here.

pollxx

Hello,

I can’t help you with drug regimes because they have never been available to me (I’m progessive) but you sounded so lonely I wanted to say hello.

This is a good, safe place to share your worries and get advice. I hope that someone with experience of DMD can add some insight.

Jane

I also wanted to say hello and that’s some good advice about seeing if there is an MS branch near you. Some of them have younger people’s groups with things that might appeal to you and a chance to meet people with MS your age. My branch have activities like swimming and dancing that are a good way of meeting people too. I understand your concern about putting more chemicals in your body, especially as you feel you are not too disabled at the minute. People on these boards have vastly differing views about that but for what it’s worth my own view is that you should take your professional’s advise and see how the drugs suit you, whether the benefits outweigh the side effects. I have been on rebif, copaxone and now gilyena in the 10 years since diagnosis and for me gilyena has been the most side effect free but for everyone it’s different. Good luck with what you decide. Max xx

Thanks all for your responses its more helpful than you imagine :slight_smile: Remita

I am sorry that you are having a difficult time. MS gives us a lot of problems to deal with and hard decisions to make. It is not possible to say for sure what the right answer is for any of us. We can only do our best, and hope that time will tell us that we did the right thing.

My personal approach has always been to take whatever medication is available that might help keep me out of trouble. I do not like chemicals either, but I like MS and the damage it can do even less.

Good luck with your decision.

Alison