Miss to Mrs. to MS

The last six months and my road to diagnosis have been a bit of a whirlwind. My husband and I were married in September, I started experiencing symptoms over Halloween, and spent the two weeks of our November honeymoon completely lost as to what was causing the numbness, nausea, temperature sensitivity, and double vision. At the time I blamed it on tropical heat and humidity and foreign foods, but when the double vision worsened I knew something was up. Immediately on our return home I went to my eye doctor; the double vision was only occurring in my left peripheral vision so I thought maybe I just had strained my eye or tired it out with endless time staring at a computer at work. I owe the fact that I immediately started on the path to diagnosis 100% to my ophthalmologist. I say this because I walked into that office thinking only about my eyes; after explaining my symptoms and working through a litany of tests to rule out any issues with my actual eyes (there were none), Doctor asked, “Have you been experiencing any numbness?” I was thrown off by that – it seemed an odd question to have your eye doctor ask. I had been experiencing numbness in my left leg, but had passed it off as nerve issues related to an old knee surgery – I’ve always had some issues with sensation in that leg. Initially I said no, because again, knee surgery assumptions, but then figured I might as well tell her about it to see how she felt it was related. That’s all it took – an exam for double vision and telling her about my numb left leg – and she said she suspected MS, just like that. I give her major credit for this because not even my first neurologists connected the dots that quick.

In the world of multiple sclerosis, symptoms in October to diagnosis in February is a quick turnaround; I absolutely understand how lucky I am to have been diagnosed quickly. For those of you reading this who did not have such a quick diagnosis I can’t even begin to imagine the added frustration and uncertainty that came with that process – I’m sure you understand even more than I do the odd sense of relief that comes with diagnosis. That’s a major part of this process that my healthy friends and family do.not.understand. Relief. I get it – it’s bizarre to think that someone would find relief in being diagnosed with an incurable, lifelong, potentially disabling autoimmune disorder. But when you experience months of weird, uncomfortable, sickening, and unfamiliar symptoms in odd combinations or at unexplained times, with no answers, it is terrifying. It’s also incredibly frustrating to not have a solution for any of the issues. I’m what my mom calls a black and white thinker; there is little to no grey area in my world. If you identify a problem, then there’s a solution, you just have to find it. Well, when you can’t put a name to the problem you can’t find a solution, and that does not work in my book. Relief. That’s what I felt when I was finally told definitively (as much as you can be with MS) that all of my symptoms traced back to MS. Diagnosis meant it was time to find a solution, and that was something I was ready to put energy into.

If I could offer one piece of advice to someone working toward a diagnosis or even someone who has already been diagnosed, it would be find a neurologist you trust, who listens to you, and who you feel comfortable with. Don’t be afraid to be your own best advocate; neurologists are the key to all things MS in your life, from symptom management, to disease-modifying treatments should you choose to use one, to just general quality of life. You’re going to be stuck with them potentially for the rest of your life, so you might as well like them!

I learned this lesson real quick. When I went to my very first neurology appointment in mid-December, at the recommendation of my primary care doc I brought along a timeline of any and every symptom I had experienced (HIGHLY recommend doing this – it makes your life and the doctor’s easier and keeps you from having to remember everything in a stressful situation.) So I pass this timeline along to my neurologist, who puts it in a folder and has me walk him through all my symptoms without even giving it a glance; that probably should have been my first red flag, but I didn’t think much of it. I had already had a brain MRI at this point at the request of my PCP, so he showed me my MRI and said there were no lesions he could see, but he wanted another one done with contrast. He ran threw the litany of neurology tests that make you feel like a bit of an idiot; if you’ve already seen a neuro you know what I’m talking about – touch your nose, walk heel to toe, rotate your arms, get poked with a safety pin – it feels like you’re just being asked to do weird stuff for the doctor’s entertainment honestly 😂 Based on the locations of my numbness, he also ordered MRI’s of all three sections of my spine; as someone who gets very claustrophobic in MRI machines, I wasn’t all that thrilled about that, but thus is life in the world of MS!

Long story short, I get my MRI’s done and go in for my follow-up, with some new symptoms like intense muscle cramping in the same areas as I was experiencing numbness. I explain this development to the doc, and he responds with “You’ve read your books,” with a grin and then moves on to talking about my MRI’s. I remember just looking at him wanting to go “huh?” but I ignored it and looked at the MRI’s that showed a pair of lesions, one on either side of my thoracic spine. Based on this information and his view that I’d had a single “attack,” he said he didn’t think it was MS, instead he was labeling it as “idiopathic transverse myelitis” – in English, that’s a deterioration of myelin (myelitis) on both sides of the spine (transverse) with an unknown cause (idiopathic), likely a one-time virus. He said that my double vision was being caused by migraines despite experiencing no pain and having a history of migraines that always come with debilitating pain. I wasn’t convinced on the migraine front, but hey, he’s the neurologist, right? He put me on an anti-anxiety medication to address the migraines and said we’d re-scan in a few months to see if there are new lesions; only then, he said, could he diagnosis MS. On our way out of the appointment, I reiterated the “you’ve read your books” comment and said to my husband, “I think he was implying I was making it up?” It didn’t sit well with the husband either, but we weren’t sure what to do with it, so we let it slide. I found very quickly that the anti-anxiety meds made me feel horrible, triggering extreme anxiety and anxiousness and disrupting my sleep. When I told the doctor, he seemed annoyed; he said I was probably just anxious about my health but we could try another medication “if I really wanted to.” That didn’t sit well with me, and after the “you’ve read your books” comment I realized I really wasn’t feeling comfortable with this doctor, I’d just been pushing my discomfort aside in favor of his medical degree.

I just happened to have a physical scheduled with my PCP shortly after, and I explained to her what had been going on and how I wasn’t sure I liked the neurologist I’d been seeing; she looked me square in the face and said, “If you aren’t 100% comfortable, then I absolutely think we should find you another option and get this figured out.” She referred me to a new neurologist to whom I took the same timeline I’d given the first; she was amazing. She walked through my timeline with me step by step, asking questions, and taking notes along the way. She ran the basic neurological tests, but also ran some vision tests and asked me questions no one had yet asked me, such as “is your double vision side by side or at a diagonal?” That caught me off guard – I hadn’t ever thought about it, but it was a level of detail that showed she obviously wanted every little detail. After reviewing my case she looked at me and said, “You are not having migraines, which I think you already know. So you can go ahead and start weaning off that medication.” She also explained that based on my timeline, I had not had one attack like the first neuro said, but that it was fairly clear I’d already had three: 1) double vision, 2) left leg, 3) torso – while the double vision and left leg numbness happened at the same time there was no way one lesion could have caused both based on where lesions would have to be located so that was my separation in space required for a diagnosis. The torso numbness nearly a month later gave the required separation in time, and just like that I technically had fulfilled the criteria for MS. To be as sure as she could however, she wanted another brain MRI but with a more detailed/intense machine as she was pretty confident there was a lesion there, we just weren’t seeing it on the MRI with lesser detail. Two weeks later I was back in front of her with a more detailed MRI image that, sure enough, showed 2 lesions exactly where she told me she thought they were. If that doesn’t instill confidence, I don’t know what does.

So there it is, my path to MS. From finishing my graduate degrees to wedding planning to joyfully starting my marriage with my wonderful husband to weird, confusing symptoms to fun (although moderately hindered) honeymooning to MS. Literally Miss to Mrs. to MS.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (12)
  • DahlblomDriven
    7 months ago

    I am very glad that you found answers and more importantly a doctor that wasn’t for lack of a better words an asshole! How are you transitioning since your diagnosis? We called off our wedding 06.23.18 a few days before getting diagnosed since I couldn’t feel my left or right toes to abdomen. Also crept to hands, going through the test. On a learning curve and have gained much back but would love to hear more about you and your management and treatment! ❤️

  • emilydavis929 author
    7 months ago

    I was fortunate that about 3 months after my numbness started, it started to subside. Now I’m back to normal sensation in my leg and very minimal numbness in my torso – I don’t even notice it 99% of the time. I’ve had to adjust my workout routine because I’ve found getting too hot or taking on too vigorous of an exercise regimen brings the numbness back, so running is out but Pilates has become a great workout option; you can fit in strength training while also working in the ever-important stretching element that also helps relieve a lot of my chronic pain. I chose Ocrevus as my treatment, and has my first infusion set end of April/early May – so far so good! Not having to take a medication every day is great and keeps me from feeling like my life revolves around MS. I’ve become extra conscious about my energy levels and need for rest, as well as being careful with heat and avoiding alcohol/sugar which are triggers for some of my symptoms, but so long as I do that I’ve been feeling pretty “normal” since my diagnosis and starting meds which is encouraging! I hope your journey is a smooth one as well so you can get your big day back on track and enjoy it!

  • emilydavis929 author
    7 months ago

    @dahlblomdriven if you find you enjoy yoga, Pilates might be worth trying! I need a little more movement/active exercise than I find yoga gives, so Pilates is a great alternative, especially in classes that use the reformer – I find myself looking forward to going as opposed to dreading exercise. Ocrevus (ocrelizumab) is still very new on the medication scene – it’s only been available in the US outside of studies for about a year, but is similar in its mechanisms to Rituxan and my doctor felt strongly about it being my best option, especially since I have limited choices being JC positive.

    If you’re curious, here’s one review on what neurologists think about it after a year of being on the market:

    https://www.everydayhealth.com/multiple-sclerosis/treatment/ocrevus-after-year-on-market-what-we-know-now/

    I took the plunge and started writing about my experiences because I TOTALLY relate to the need to hear other people’s stories so yours feels less scary – https://misstomrstoms.blogspot.com/ – I found personal experiences were a hard resource to find when I was initially diagnosed. Makes it way less intimidating to know others are doing it and it’s going well!

  • DahlblomDriven
    7 months ago

    Thank you dear, I’m working on yoga and still getting my walks in but one day at a time! I haven’t heard of your medication I’ll have to research, while im trying nutrition and REbif The part of normality to your case calmed my nerves and gives hope!!

  • AnywhereOutOfThisWorld
    8 months ago

    Thank you for sharing your story Emily. I was diagnosed with Multiple sclerosis in late July of 2017 after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein ‘o’ bands. Due to the amount of lesions & ‘o’ bands, my neurologist believes I’d actually had MS for quite some time. My diagnosis came quite quickly. You’re lucky you got your dx without the spinal tap. Although the spinal tap isn’t really bad overall. I agree the right neurologist is paramount. Actually the neurologist my pcp originally recommended I felt wasn’t close enough to where I lived so I just took a shot in the dark and picked one closer by. He turned out to be a great guy, all business but I liked him & we got along. The relationship with the neuro, if it’s good it can make Ms dx much more pleasant. I also have an amazing pcp and he is the one who suggest an MRI of my brain that eventually led to my Ms dx.

  • emilydavis929 author
    8 months ago

    Unfortunately I didn’t escape the spinal tap either – mine was also stocked with o bands but my neurologist was more intent on finding lesions on an MRI. Hopefully that will be the first and last lumbar puncture because you’re right, they aren’t horrible but they definitely aren’t pleasant either! Glad to hear you’ve found a neuro you trust and like working with; I can’t think of an element more important when it comes to treatment and managing MS!

  • emilydavis929 author
    7 months ago

    @dahlblomdriven I absolutely should have gotten the patch, I was just convinced at the time I was being oversensitive about the headaches – hopefully I never need a tap again but if I do I’m getting the patch right away! Glad to hear it helped you!

  • DahlblomDriven
    7 months ago

    The tap was horrible but I had to have the patch put in sadly because I was the select few that would get leackage! Instant relief! To never again!

  • anitascott
    8 months ago

    My husband’s MS has been cured after 35days treatment with CBD OIL. I am sharing this testimony to help others. if you are a MS or Cancer patient get to this guy in Cali via email..(tplug05 at gmail dot com).He is a life savior.The same thing he did to my Husband, He can as well do it for you.

  • BonnieB
    8 months ago

    That is one outrageous comment. I’m glad your husband found benefit from that product – but thousands of others DON’T. And plugging someone’s product here is spam, IMO. Shame on you. If there was a ‘cure’, it would be out there. I’m shocked that your comment was allowed to remain up since it’s a blatant advertisement.

  • emilydavis929 author
    8 months ago

    Couldn’t agree more…

  • Erin Rush moderator
    8 months ago

    Hi emilydavis929! Thank you for sharing your diagnosis journey with the multiplesclerosis.net community! I am so glad your diagnosis process was (relatively) quick and smooth, but I am sorry your honeymoon was disrupted by MS symptoms.

    I am also sorry your first neurologist was such a poor fit for you. You are right that feeling comfortable with your physician is so important. It sounds like your new neurologist is a much better fit for you and willing to partner with you to find the best treatment plan for you and your health.

    I hope the rest of this year is much calmer for you!

    Thank you again for sharing and for being a part of the community! Best, Erin, MultipleSclerosis.net Team Member.

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