I’m 34 and about 2 years ago now an incidental MRI finding showed I had several brain lesions. About a year later I have a drawn out worsening headache (for 3 weeks) before going to A&E. A repeat MRI showed another lesion had developed. I’ve since started having pins and needles in my right arm and leg and so they are going with an MS diagnosis. I need to look at and choose treatment but have no idea. The information I’ve been given is on Rebif, Copaxone and Plegridy. Does anyone know if one is more effective than the other?
I have so many questions that I don’t think can be answered. I’m so worried about disability and work, and consequently losing my home. I thought I had digested the news given at my appointment yesterday but broke down crying at work so obviously haven’t! I would really appreciate any information about how MS affects others, how quickly it’s progressed, treatments tried, anything really!
H there.
Sorry but I dont know anything about DMD treatments, as having had PMS for 24 years, they didnt apply to me. But I do know that many, many people find them fantastic.
I retired from work in 2000, due to my health issues.
It was a huge worry, but you have to do what you have to do.
Do you know about PIP? It’s a disability benefit you can clam whilst working.
Accepting a serious condition like our’s sure takes some doing.
Best advice I can give is;
pace your activities
accept help when offered
never beat yourself up for having MS…it is NOT your fault.
Best wishes, Boudsxx
Despite lots of scientific research it is pretty much impossible to answer your question. There are so many variables in the condition / patient / circumstances, so my suggestion is that you read things like https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies
Then discuss with your medical team and then try one to see how it works for you and change if necessary. You are the expert on how you feel . Sorry I can not offer anything better. I have tried several powerful drugs but there seems to be no positive or negative impact for me whilst for others there have been significant benefits or problems.
All the best
Mick
I’m 53 now, diagnosed 20 years ago- similar age - I’ve been on copaxone all these years and still working (office) and on my feet - have a few issues like pins and needles, stiffness etc but doing pretty good, all things considered.
Thankyou for your replies. I think uncertainty is definitely the hardest thing. If I had a broken leg and someone told me that leg will always be broken I could adapt and plan. The only problem I am currently having is pins and needles but no idea what it’ll be like in the future, which I know no one can predict😔
I don’t mean to sound trite, but my MS has helped me to live in the moment. Try not to speculate or worry about stuff you can not change, save your energy for making the most of what you have now. Easier said than done and I am not dismissing our very real and valid fears but I choose to put most effort into the here and now. I also understand that everyone’s circumstances are different so there are no “right or wrong” ways to be.
All the best
Mick