Some Things People Wish They Knew When Diagnosed with MS

This past month, we published an article by one of our advocates, Devin Garlit, that centered around things he wished he had known about how his MS would progress upon diagnosis many years ago.  In response, many of our community members affirmed not having expected many of the obstacles they have had to face since diagnosis, including cognitive and mood issues, the complex trial-and-error nature of MS treatments, the unpredictability of MS progression, as well as social and medical support, additional stress, and the need for sufficient financial planning.  We wanted to share what they had to say. MS can affect everyone very differently, so not all of these themes may resonate with you, but it seems many individuals in our community have converged around a few key issues.

Friends and Family Support

“The hardest thing for me to explain to friends and acquaintances is my (often) sudden need to stop engaging and seeking a place for “quiet time” in order to regain control of my thoughts and executive function. Sometimes I have to just blurt out, ‘I can’t think right now’”

“If I am overtired or overheated, my brain turns to mush. I need my husband around when I attempt new activities that require exerting energy in public. He watches over me carefully and can tell when I will need help. So, I don’t attempt challenges like bus trips or museums, or traveling to new places unless he (or some other understanding relative) is with me”

Cognitive Fog and Stress

“From one person in a STEM career to another, cognitive issues are definitely the most scary for me, and my most persistent symptom (well, and fatigue … but the cognitive fog is almost like an extension of fatigue), and are probably responsible for my recent job “re-assignment” that has left me devastated beyond words”

“Stress has always been present in life, it is just how you deal with it that is important and that is something I am working on. Maybe looking for a counselor or someone who I can talk to for some tips”

“Wow can I relate, especially to the cognitive issues. I wasn’t prepared for that”

The Unpredictability of Medical Support

“My first brain doc was diagnosed with MS herself and had to retire. Reading this was like reading a biography of my life with MS. About to switch health insurance and consequently, will be starting over with a new neurologist. This will be my 4th brain doc”

“Yes the doctor part is true and so is the stress. I just recently changed neurologists and will probably change again next year”

“The part about the doctors is so true! You must advocate for yourself. I was seeing a neurologist that had me coming in every month! It was getting ridiculous and he didn’t seem to care how I was doing just that I was on [the same medication]”

“I was not very well informed by my neurologist when I was diagnosed. He told me to google MS and do my own research about it—that was the biggest mistake. I scared the crap out of myself”

Although MS can affect everyone differently, it is very apparent that no matter where are person is in his or her battle, there are some common things people don’t expect.  Please keep sharing your stories and personal journeys with us.  By sharing our experiences, we may be able to paint a clearer picture of what life may be like for those who are just beginning on their battle.

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Comments

  • Sharyn flannery says:

    Hit the nail on the head, awful times
    Trying to concentrate when tired,
    and not wanting to do anything.

  • Dezzare Engstrom says:

    Hi everybody, my name is Dezzare and I’m new to conversating with the world or anybody really about my diagnose, so here we go…. i was diagnosed with this unpredictable, selfeducating, yet horrible disease at the age of 27 when my life was going as I planned; both my kids were in school, my husband had a good job, I had a great job. My job was to be people’s caregiver you know go to my clients home and tend to their needs. I pretty much did house cleaning and also made their meals. I did dishes, washed clothes, made bed, have them shower, cut their nails(and yes even their toe nails) 😯 . My days were never “rough” days they were quite the opposite they were lovely the most wonderful days of my life until one day I got a regular cold and after the second day I felt really different. See I’m glad I know my body cause I walked/ limped my way into the Dr’s office and told her I felt way off balance like my equilibrium was thrown off so she had me stand up(real close to the bed in case I fell over) and hold my arms straight out lifting from my side straight up and out. She then gave a little nudge to one of my arms and I tipped a lot harder then what she expected so she says “I think we should get a cat scan, do you have a certain neurologist you would like too see ?” … Now was that was suppose to make me feel better? Well it didn’t it just scared the shit out of me. I mean you go to the Dr’s office for a cold hoping to get some medicine not another Dr to add to your contact list. Well I went and got that doggone test and the neurologist called me back and said I was gonna have to see this other neurologist who specialized in what she seen was wrong with me so I go see this Dr and she tells me what it is that I have and continued with a photo of my brain😲 it looked like swiss cheese😭. I think I’ve been in denial for the passed 8 years and it’s finally hitting me. I mean: HELLO YOUR BODY IS FIGHTING ITSELF QUIT THE PITY PARTY AND MOVE ON WITH YOUR LIFE YOU BIG DINKY DINGAS ¡!¡! So that’s what I did I shot myself up with my meds for the first 2 years and I moved to California and got a nuerologist there and he gave me the best meds my MS a 1 pill a day called Aubagio. I LOVE IT!☆!☆! Since then I’ve been living my life normally on normal circumstances. I talk to my Drs regularly when I start feeling weird or just get a regular head cold.

    • Angel says:

      Hi Dezzare, thank you so much for reaching out to the MSAA and sharing your story. We’re glad you’ve found our group and we hope to help provide you with MS information and resources and support. We have an online peer support forum called My MSAA Community where you can communicate with others living with MS too, https://healthunlocked.com/mymsaa. Feel free to take a look at this community if you’d like to reach out to others about your experiences. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist

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