New to ms the first week of many weeks - My MSAA Community

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New to ms the first week of many weeks

RoyceNewton profile image
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New to Relapsing Remitting ms (RRms) its first week month decade. Everything is a learning experience. Mistakes will be made, I most certainly made mine. People will give “YOU” suggestions and make recommendations. They may appear reasonable but, this is an incurable progressive chronic condition. I remember twenty plus years ago I was desperate as well. I searched and it is hard to take for a young man to be told that “YOU” have a very limited future. The ONLY medicine available at the time was Interferon Beta 1b, Betaseron or Betaferon depending where “YOU are in the world, and I was an absolute coward when It comes to needles and they asked for one every other day. Well eventually I pulled my head In gritted my teeth and did it. There was really no other option, I had seen what people were like who did nothing, took no medicine. I most certainly did not want to be like that, just yet.

So I slowed the condition down, took the needle. Really disliked it but I carried on. I saw no reason why I should not make the best of the hand I was dealt. This was my lot in life and I had to deal with it. Start to find away to live with cope with and even thrive with this condition. It was not simple and step by step. I learned that it was incurable, that it got worse over time, that chair I feared so much may very well be in my future, but I also learned that it may not be. A future of disability was not written in my stars, I could have some influence over my destiny.

We have the option available for disease Modifying Therapy (DMT) importanhnot note here MODIFYING NOT CURING, remember this is an incurable illness. I will take it a step further and ask what illness does our species cure? I think none. Do not believe me, go work it out for yourself. I had Beta, today “YOU” have many more. I would recommend that “YOU” take the strongest one that “YOU” can find. Ocrevus I believe, if there is stronger let me know. Take it and do not stop taking it. Yes there are side effects, as there are with ALL medicine. Find ways to cope with it or stop and find ways to cope with perhaps fast moving disability for that is what is in store for “YOU”. Find some very old ms magazines thirty years or so. Everybody was smiling in wheelchairs back then. I remember it scared me. Today they are still smiling but not in chairs. They did not have DMT back then, we do.

As I said it is DMT NOT DCT (Disease Curing therapy) so look after your diet, your mindset your exercise your outside influences. Find a friend spouse who will support “YOU” not hold “YOU” back from trying to do for yourself. Reach for the stars, accept the moon but…

Royce

Make good choices for you

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RoyceNewton
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Doubled51 profile image
Doubled51

Great advice to all Royce.

RoyceNewton profile image
RoyceNewton in reply to Doubled51

hope it helps somebody

carolek572 profile image
carolek572CommunityAmbassador

Solid advice if I do say so myself. 'ms' might stop you from doing things but with a little adaptability, you can still do it. :-D

RoyceNewton profile image
RoyceNewton in reply to carolek572

good point that is what is all about, adapting

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