Just a thought for newbies: Please don't... - My MSAA Community

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Just a thought for newbies

Tinker-Belle profile image
5 Replies

Please don't get on this site and read comments from those of us (like me) who have issues you never, ever want to have and let it scare you. For that matter, please don't read anything on the Internet and let it scare you. Maybe scare is not the right word. It is scary to have MS and having no idea what that means or will mean is scary. However, we are ALL so different and you are NOT doomed. For some of us, the entire journey consists of lots of ups and downs. For others, there may just be some really bad moments but then life is completely normal again. For others, more often with progressive MS I imagine, there may be simply a gradual worsening. Etc. In other words, to me, I like this community because it is a place where we can speak freely and know we are not alone and, perhaps, pick up some great ideas and make new friends. However, find a doctor you feel comfortable with. Talk with him (or her). Surround yourself with a support team appropriate for you and listen to your body. This is not a life sentence. It is a journey and it is so different for all of us. Those who have gotten to know me a little bit...sorry, I rambled again. I just don't want folks to be afraid of us or because of us. I want us to be a source of comfort, understanding, and, yes, even laughter. Wishing all of you a beautiful and blessed day.

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Tinker-Belle profile image
Tinker-Belle
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5 Replies
Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Very well put Tinker-Belle thank you!

J🌠

Fancy1959 profile image
Fancy1959

Tinker-Belle, it's Fancy1959. What an awesome post you put out the chat room. I think your sentiment was something that needed to be said long ago. For all the newbies out there as Tinkerbell said remember MS is a unique disease that affects no two people exactly the same. Some people go on for years and years and never even discovered the monsters been living with in them. Other people are find out very soon after MS starts within them. And today we are so very fortunate to have so many choices in the Therapies that are out there that we can actually fight Ms with the tools that are being developed. People who have had it like myself for 20 plus years I had nothing to fight it with except for the past five to seven years. Because of that Ms had a chance to really do damage prior to the diagnosis.

So newbies find a great neurologist and get on a DMT or as we call it a disease modifying therapy. Your DMTs are your best possible weapon in this fight against MS as they are designed to hopefully prevent or at least slow the progression of your MS disability!

greaterexp profile image
greaterexp

That’s very true and a great reminder for all of us, whether new to MS or not.

Linda3579 profile image
Linda3579

Thank you Tinker-Belle! That was a really GREAT post! 🙏. Linda

great post ~terry ;)

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