Have you ever noticed ?: Have you ever... - My MSAA Community

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Have you ever noticed ?

kwhompus profile image
20 Replies

Have you ever noticed that not all advice is good advice? Some advice has dark undertones or make you feel isolated and sad. I mean ,come on, who wants to be constantly reminded of our state of being in a negative way. Sometimes ,the advice we give is best meant only for ourselves. What I'm trying to say is, we must be careful less we send people on the edge in a slide

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kwhompus profile image
kwhompus
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20 Replies
Kenu profile image
Kenu

Totally agree 👍😉🐾🐾 Ken

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Especially for those of us that are just beginning their MS journey. I know I spent days and nights searching for information. I learned to use common sense when reading all the information. HealthUnlocked and MSAA are the best! So much available information especially On MSAA 👍😊

mm1527mm profile image
mm1527mm in reply to CalfeeChick

I agree, diagnosed over 2 years and I sometimes still feel I was just diagnosed some days are better than others

CV97 profile image
CV97 in reply to CalfeeChick

Exactly! I need reputable sources I can read and take in on my own time! There is so much to learn and finding good resources through all the muck is half the battle. Keeping up with all the changes (materials, research, best practices, meds) is the other half!

Hi kwhompus 😊Most definitely , agree!

🙏Lisa💓💕

anaishunter profile image
anaishunter

good point. It's always important to put yourself in the shoes of the receiver when pressing the "Send" button. However, nobody is perfect so there will always be slippage.

BlanketTime1 profile image
BlanketTime1

that's the worst, going to someone when you're afraid and they do more damage than good. it's hard for me to reach out to people in the first place as my role in my family is to take care of everyone else's needs.

goatgal profile image
goatgal

Though advice from individuals is well-meaning, it's best to find information from reputable sites like MSAA or NMSS. The MS family encompasses newly diagnosed as well as those who were diagnosed decades previously, each of us at a different point on our MS journey. We should indeed be careful with our words. And sparing with advice!

leking1 profile image
leking1

Well said by all! Especially with something like MS, which affects each person very differently.

falalalala profile image
falalalala

Agreed.

JTZES profile image
JTZES

I probably fit that bill. I'm pretty straight forward when I post a response to someone who is asking a question when they are newly diagnosed.My goal is to put them on the right track in getting them on the right track to move forward.

I apologize to anyone I may have offended over the years. I'm Sorry to all.

kwhompus profile image
kwhompus in reply to JTZES

Your advice has always been on point and used sparingly. You have no need to apologize to me. Please continue in good spirit.

JTZES profile image
JTZES

My apology was just not for you but anyone that reads your post. I wanted to get it out to everyone.Thanks for bringing it to my attention.

kdali profile image
kdali

Can I start leaving a “TOOT TOOT” in the comments now when I see the negativity train rolling though? 🤔

falalalala profile image
falalalala in reply to kdali

A toot toot?

🤣🤣🤣

kwhompus profile image
kwhompus in reply to kdali

please oh please do !

kdali profile image
kdali in reply to kwhompus

🤣🤣🤣

Amore55 profile image
Amore55

Agreed! So happy to read your post !

HarrisC profile image
HarrisC

My wife works at the local hospital. As soon as the medical record was available from my first mri ordered due to optic neuritis she printed it out and took it to their best neurologist.

Of course he did not give her a diagnosis, but said: it is either MS or NMO and to tell me whatever I do "NOT TO START GOOGLING FOR ANSWERS"! That he would write me a recommendation to one of the best Neurologist Doctors that specializes in MS at an MS designated facility

Guess what the very first thing I did was?

Yep, started googling. There is so much disinformation out there. He was correct.

jackiesj profile image
jackiesj

Yip, i too apologize if any words went out unintended....

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