Your MS Diagnosis

Your MS Diagnosis

An MS diagnosis can come with so many emotions and questions. Everyone’s experience and road to a diagnosis can different but know you’re not alone. MS is the one commonality the community shares.

So, we want to hear from YOU! What is your diagnosis story and how did you cope? Find out the ways you can share your journey to an MS diagnosis below.

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“Getting a diagnosis

What was the most challenging or frustrating part of your diagnosis?

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How were you diagnosed with MS?

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“Getting a diagnosis
Related articles
Read about our advocates’ journeys to diagnosis.

My Diagnosis
Calie Wyatt—October 26, 2016
When I was three years old my right eye began to turn in. I also had signs of clonus, which is defined as involuntary and rhythmic muscle contractions…
READ MORE

A Few Thoughts for the Newly Diagnosed
Matt Allen G—June 23, 2016
So I was reading an article in a magazine about multiple sclerosis (I won’t say which magazine) that talked about coping with MS if you are newly diagnosed…
READ MORE

Diagnosis Acceptance
Ashley Ringstaff—July 21, 2017
When I was first diagnosed, I didn’t really know what MS was, what caused it… I didn’t know that there wasn’t a cure available…
READ MORE

Misdiagnosis and MS – Community Experience
Editorial Team—February 11, 2015
When it comes to MS, there are multiple obstacles that get in the way of an immediately accurate diagnosis…
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Leading a double life with a MS diagnosis
Christie Germans—September 30, 2013
Coming out to friends, family, colleagues and others is also challenging. It can be intimidating, scary and down right stressful (like we MSers need any additional stress…)…
READ MORE

How Much Did You Learn About Your MS During the First 100 Days After Diagnosis?
Kim Dolce—August 9, 2017
I’ve been asked by the wonderful people at MultipleSclerosis.net to write about a “typical day” in my life. My first reaction was, “Will anyone really be interested?” and they assured me they would. So here goes. Fingers crossed…
READ MORE

Nearly 17 Years With MS: Some Things I Wish I Knew When I Was Diagnosed
Devin Garlit—November 18, 2016
Wow, times sure flies as you get older, doesn’t it? As I write this, I’ve been diagnosed with Multiple Sclerosis for 16 years (actually, closer to 17, my MSiversary is in February)…
READ MORE

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  • PattiandBob
    2 months ago

    My husband and I have been living with his MS diagnoses for about 40 years now. When he was first diagnosed there was nothing to do for it .. just survive it as best we could. Then 7 years later when he had a major flare up the neurologist “admitted” she had “lost” his file and that there were now treatments and he should have been on them years ago (sigh). We began the Rebif regime and it helped for a number of years. However his MS began to progress and he soon had to quit work. Sadly we got another “uninformed” neurologist and he took him off ALL medication saying nothing would work now. TWO years later things were getting bad and a friend who is a physician’s assistant lined us up with a physiciatrist who recommended Bob see a MS specialist in Seattle. Off we went and he was immediately put of Tysabri. Sadly by then he was diagnosed as having Secondary Progressive MS and he had gone from walking to a cane to a walker and then to a wheelchair. He was on Tysabri for 8 years (which really slowed down the progression) but became JV positive and was taken off the Tysabri. He currently is on Ocrevus and we are “hopeful” he will not slide further. It’s been pretty frustrating for him to go from full functional to needing help with everything (he can still feed himself if I cut up his foods) .. but thankfully he also has this amazing personality and character which makes life so much easier for both of us. I am his full time caregiver and wife and although we would love things to be different, we are happy.

  • ShelbyComito moderator
    2 months ago

    Hi @pattiandbob, thank you so much for sharing what you’ve both been through. Your gracious perspective is so admirable, especially in light of some pretty unbelievably frustrating experiences. You are not alone in dealing with doctors who lack knowledge about MS. Although your husband is not newly diagnosed, this article explains why MS specialists make such a difference and why they can be so hard to find: https://multiplesclerosis.net/living-with-ms/my-advice-for-newly-diagnosed/
    I also invite you to share your story with the community if you feel comfortable doing so here: https://multiplesclerosis.net/stories/
    I know an online community can only be there for you in so many ways, but please know we are here for you and feel free to reach out anytime you need information or support or you have something to share. Thank you for being a part of our community!
    Best, Shelby, MultipleSclerosis.net Team Member

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