Just me
I have been fighting MS now since at least 2011. I have seen at least three neurologist and many other doctors as well and one thing that they all have in common is that none of them have MS. I have a hard time taking any advice from someone who has not experienced MS firsthand like I have. I believe in some aspect, I know more about it than they do.
It has been my experience over the years that the drugs Doctors and neurologist are pushing are ineffective at best.
Don’t get me wrong I believe doctors have their place. In fact, I think they are almost miracle workers When you are really banged up and have to be put back together again, but when it comes to illness and disease, not so much.
I was diagnosed in 2011 with PPMS. I am still going today without the use of any disease modifying drugs at all, but I will admit that I have to use a walker or a cane.
I know, I know, I am not you and you are not me. MS affects everyone differently.
I try to eat healthy (mostly plant based diet), I don’t smoke tobacco, I drink very little or no alcohol. I try to live as clean a life as possible.
(Ask you’re own questions, find you’re own answers)
God gave us all a brain, I believe his intent was for us to use it.
So great to hear that you've been fighting it since 2011 and going strong. Even walking with a walker or cane is still walking. Good for you. Doctors are humans just like the rest of us, and while that is considered a vocation, it's still a profession where they can only do so much to understand a condition. I've found since my diagnosis of RRMS, I have been put onto Kesimpta, a monthly injection and pretty much left to it. I had what I believed to be a pretty major flare up around Christmas, was given an MRI, and they said no new lesions were found. So crack on...
@Xyzz, I remember when I was offered Ocrevus for my PPMS. I looked at the side effects and the sub 50% efficacy and decided it didn't make sense for me. But, the more I thought about it, the more I realized I had nothing to lose. My memory was already toast. My cognition was already toast. My gait and balance were already toast. I was already having continence issues. What was the worst thing Ocrevus could throw at me? PML? Raging COVID? A fifty dollar deductible? I don't know if Ocrevus slowed my PPMS down. I know my MS continues to progress, but without Ocrevus would it have progressed faster? Durned if I know, and since it's impossible to prove a negative, I'll never know. So far, Ocrevus hasn't presented any real downsides, so worst case scenario I'm wasting the insurance company's money. And I agree, everyone on this forum with MS knows more about *having MS* than any professional we might see. That said, those professionals do know more about MS the disease state than I ever will, and without them I wouldn't have access to the resources I currently do. I'm glad you're managing as well as you are, @Xyzz - you give me inspiration!