MSAA Wants to Hear from YOU!

[MSAA_archived]

March is MS Awareness Month and MSAA has several activities planned! We want to hear from our members – that means YOU! We are asking that if you feel comfortable, please answer the following two questions by replying below. We would like to have all answers by Monday, February 27th, after which we will be sharing some of your answers anonymously on MSAA’s social media channels in March.

Thank you and please keep following MSAA for more updates and important information regarding MS Awareness Month!

1. What do you wish you knew when you were diagnosed?

2. What advice has helped you that you would like to share with others?

[leking1]

I wish I had known that there was the possibility of hundreds of variables with MS, from symptoms to management, to types of MS, and later on, medications. I was DX in 1980.

The best advice I ever got was to remember that I was my BEST, and sometimes, only advocate. It is up to me to ask for what I need, as often and as long as it takes.

[MSAA_archived in reply to leking1]

Thank you for your response!

[Mollyabigail]

1. I wish I had known I would not be dead in 6 months. Life goes on, just differently. My neurologist did not explain anything (nothing!) to me.

2. Follow Dr. Aaron Boster's 5-for-5 tips for dealing with M.S. His YouTube videos were, and are still, a God-send.

[Xvettech in reply to Mollyabigail]

I was interested in what you wrote about dr Aaron boster I checked out 6 videos 😂 (I was going to start with 1). His information is so interesting! I love it :). Thank you so much!

[Mollyabigail in reply to Xvettech]

I am so glad! He's a gem.

[MSAA_archived in reply to Mollyabigail]

Thank you for your response!

[twooldcrows]

would of liked to have more information about MS at the time of being told i had it ...

[MSAA_archived in reply to twooldcrows]

Great comment. Thank you for your response!

[NorasMom]

1. I wish getting a diagnosis wasn't so difficult. I understand that they don't want to hand out DMT's to people who don't really have MS, but I don't think the McDonald criteria is suitable for everyone. They need to find alternatives to add to the mix for the many who don't show visible lesions on MRI's until years down the road.

2. MS is a chronic illness. Think of it the same way you would asthma, allergies, Juvenile Diabetes, or even just having to wear glasses full time. It's not something to fight; it's something you have to learn to live with and adapt to. Fighting something you can't fix is only going to frustrate you. Fight the symptoms if it makes you feel better, but don't fight the disease itself.

[MSAA_archived in reply to NorasMom]

All great answers. Thank you for your response!

[sashaming1]

1. What do you wish you knew when you were diagnosed? Future chances for health outcomes.

2. What advice has helped you that you would like to share with others? People with MS have a high rate of depression.

A lot more knowledge of MS has been gained since I was diagnosed.

[MSAA_archived in reply to sashaming1]

Thank you for sharing.

[kdali]

I wish I had known that temperature changes could turn my brain off.

The expectations you have of yourself or of others may need to be changed, multiple times.

[MSAA_archived in reply to kdali]

Thank you for your response!

[mrsmike9]

I wish I knew that I would be fine. I'm a strong person and I forget that all the time. People! Write down your symptoms and questions! There is nothing worse than leaving the neuros office and remember something you wanted to ask!

[CalfeeChick CommunityAmbassador]

I wished I knew what is “MS” Diagnosed at 68 years old. My first neurologist called me on the phone to tell me. Then told me, “Don’t be upset, you’re 68, meaning old!! Then started telling me what meds etc. I had a new neurologist by the following week! Love my New Nuero and his staff!

[CalfeeChick CommunityAmbassador]

#2 . I did a lot of research on the computer called some local hospitals to see if I needed to be admitted, which I was immediately declined. I found this forum the month after I received my first diagnosis. Health Unlocked and MSAA have been my guiding lights. I did a lot of research on both sites I read along in the forum until I felt comfortable to talk about myself and answer questions that others had. I do feel blessed that I have so many friends on this this forum. Thank you Emily for asking two important questions.

[LHermitte]

When I was first diagnosed, I wish I'd known that with the advent of so many powerful, effective treatments for MS, I would not be facing an inevitable descent into disability. Some of the most helpful advice I've received, and would also offer, is to take life in 24-hour parcels. Anyone - in perfect or less-than-perfect health - only has finite, 24-hour chunks in which to live their daily lives, so that's helped me face obstacles with more ease. And on a rough day, remember that life is always in flux; a better tomorrow is on its way.

[MSAA_archived]

Great answers! Thank you for your response!