Choices, what do I do: Newbies, lost... - My MSAA Community

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Choices, what do I do

RoyceNewton
RoyceNewton

Newbies, lost, overwhelmed. Do not know what to do.? Take a seat under the shady tree. Staying cool is important for ms, besides I do not want to get a sunburn. So let us talk about this.

Okay, Disease Modifying Therapy ( DMT) which one? What if I do not like it? What if it does not like me? What if I can not afford it? And many other questions that YOU might think of.

Most importantly, this is NOT a cure. If somebody ever says that they can CURE your ms RUN. Do not walk, RUN in the opposite direction. There is NO CURE. Just lots of ways to take your hard earned scarce money from YOU.

Having come to terms with your incurability YOU are now faced with a DMT choice. There are many out there now which is a very good thing so let's get about picking one.

Your neurologist has an opinion, perhaps even a recommendation, but my friend it is YOUR CHOICE. Ask all about the procedures, in depth. Get comfortable with it and the answers that YOU are given, the side effects and how long should it be before these normalize.

What alternatives DMT'S do I have? Research, I recommend multiple sources. Drug companies, msAA. National ms Society even World of ms Society (I think it is called) Pick a statistic that they all have in common and the highest one wins. Then look at long-term history, the method of taking. I HATE needles but did Beta for years until Tecfidera came along. One tablet every twelve hours is very easy for me, now.

Side effects I never really bothered with. I knew I could cope with headaches and upset stomach just meant being close to a toilet\bathroom. Besides that have to list all of them. Just avoid the ones that might kill YOU. That is my opinion.

These are the simple things that YOU need to look at to help YOU make your decision. List the pro and cons on a piece of paper, and make your mind up. The sooner the netter. The mischevious gremlin that is ms loves when YOU procrastinate. DO NOT PROCRASTINATE start a DMT yesterday.

That is a pretty basic decision-making process, but the decision IS pretty basic. Do I want to do the best for myself that I possibly can or, I prefer not to talk about it, but YOU know hat I mean.

The choice is yours, choose one and get started it is long journey.

Royce

Doing the best that I can with every decision I make.

4 Replies
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Love this

Thank you

Thank you RoyceNewton,

Today happens to be the day of my MS DX. Four years ago today I heard those words, Allen you have MS. I don't ever recall being so very angry. After I wa spur with a specialist and the lumbar puncture confirmed the clinical DX. I suppose there was a bit of relief in a way for I had been bounced around from Dr to Dr just throwing pills at the symptoms. I was still angry because it wasn't fair that just when things were getting pretty good it was all ripped out from under me. I wish I would have found a informational piece of writing (as you often do) to help lesson that blow. I guess in the grand scheme of things, im still a newbie. I often dread the thought of 40+ more years with this horrid affliction. Hiwever reading posts by those whom have bden down that road (MS veteran warriors) really can go a long way for inspiration of "I CAN DO THIS!" Each day I wake, "ok I just need to get through today and do the best I can for a better tomorrow" supportive posts help so tremendously, because when I'm down, then I'm fighting to many battles at once. So I want to say thank you Royce.

Thoughts and Prayers,

Allen

My pleasure, glad it helps a little.

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