I am not a neuro or any sort of medical ... - My MSAA Community

My MSAA Community

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I am not a neuro or any sort of medical professional

RoyceNewton
RoyceNewton

What I say comes from my personal experiences and contacts over my twenty years with ms. Read what I say and if it suits "YOU" and only "YOU" feel free to use it. Change it as "YOU" like I will not be upset.

My feeling always is that I, in your case "YOU" are what is important. Do what has to be done to get what "YOU" need, so that "YOU" can stand proudly in that wedding picture with your child. There is nothing wrong with being in a decorated chair or scooter, but aim for the best and accept third place. Do not aim for less "YOU" may find yourself achieving it. With that goal in mind, Disease-Modifying Therapies (DMT) are not the same. Not by a very long shoot. If "YOU" do not understand what the small print says and your neuro will not explain it to "YOU", look elsewhere for help. I believe the msAA and NmsS have people that can assist "YOU" I understand this is new to "YOU", it once was for me as well. I do not like to say this as I know how scared "YOU" are but "YOU" have to start learning this illness. It will not go away by ignoring it, it loves it when "YOU" do that. ms only just attacks more and more and my friend "YOU" get worse and worse. Making it harder to stand tall in that wedding picture.

Relapsing Remirring ms today is a very very doable illness. It just requires "YOU" to change your mindset a little, and tell yourself that " YES I CAN, YOU I WILL AND VERY SOON YOU WILL BE DOING ms" I did and I am not special so I guess "YOU" can as well. For "YOU" my friend are special and deserving to be smiling in that wedding picture. This is a longterm illness, take a long-term approach and give yourself a chance to succeed, and do what needs to be done to stay strong.

Royce

determined, educated and strong, but not special. That is YOU.

7 Replies
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I have such bad luck w DMT’s. And now that i am on medicare its unaffordable. So frustrating

rather, but that is the systam we live in unfortunately

Totally

Oh that's rough midgey. Hugs from afar.

Thank u 😘

Wonderful post Royce!

Now I have a question - how do you know that you've gone into a remittance? When I was diagnosed in May this year they guessed I was primary progressive, but that was so I could get Ocrevus. I'm doing 70% better now and seems to be sticking/consistent. Any thoughts appreciated.

this is a hard one. I have never worked it out personally. I would assume just asking neuro for a straight amswer or getting a second and third opinion

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