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potter
2 years ago

I had a aunt who had MS before there was any treatment, she was diagnosed when she was 28 and died at the age of 50. She lost her mind probably a year before she died, her body started shutting down. She did get treated with steroids when she had a relapse. This is why I started on Rebif as soon as I was diagnosed, I am taking Tecfidera now. Potter


brittany-leigh
2 years ago

There is zero conclusive proof that the meds for ms cause any types of alements. I’m a believer that what’s going to happen, will happen regardless. But you should treat your disease for sure.


tracyd
2 years ago

I had lemtrada as my only first and only treatment quickly after diagnosis. As a result I do not take any prescribed medication at all.
In relation to dementia type illness – I’ve not heard any meaningful statistics about it having a connection to MS

If that type of illness ever starts in me then I’m off to Switzerland for a cocktail – there will absoloutly NEVER be an occasion where I am kept alive and forced to decay in the way my grandmother did for the last 10 years of her life 🙁

If I did that to one of my dogs or cats I’d be prosecuted for cruelty 🙁


bethtutoli
2 years ago

My mom was diagnosed in 1991. She didn’t take any MS medications and she passed away on 2009. When I was diagnosed a few weeks ago, my first question was what medication can I take.


vlaurie
2 years ago

Thank you, Potter, brittany-leigh,TracyD,bethtutoli for all the info. I have RRMS so I don’t think I will eventually die from it, from what I can understand. It is accompanied by severe depression which can also be hard, agreed?


tracyd
2 years ago

@vlaurie

Depression is something common for people with MS but it’s certainly not a ‘given’. As an newly diagnosed in this day and age you can fight back and take control of your life again which is motivating rather than depressing I find xx


mmhhpp
2 years ago

Hi vlaurie, i have never seen that connection in the scientific literature and i read A LOT. Get your MS treated that is my advise! Of course it is your choice. I also was diagnosed with RRMS , i had 3 years of stability and now i am going down……but i want to believe that thanks to medication at a slower rate…….


highheeledfagin
2 years ago

Hi. I didn’t qualify for DMDs for the first few years of my diagnosis, then things went on a steep decline. After I started Avonex, I rarely had any relapses. There’s no way to be absolutely certain that it was anything to do with the meds, but I’m pretty convinced. Generally speaking, I reckon these disease basically does what it wants, but we can do things to slow it down or knock it off course. For me, diet, exercise, lifestyle and fatigue management are a big part of that, but so are the meds.


vlaurie
2 years ago

Thank you, Everyone, for your comments and advise. 🙂 Much appreciated.


vlaurie
2 years ago

Potter, do you find you get “moon face” from the steroids if that is what those drugs you name are?

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