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Hi, new and recently diagnosed - sharing my story

Hi,
I'm new to all this and exploring some resources - figured I'd say hi and share my story, I just turned 29 in February and was diagnosed on March 4th with MS.


On January 13th, I had the worst headache of my life, I took Excedrin, had ice pack, nothing helped and it lasted hours until I eventually fell asleep by 5am, when I woke up the headache wasn't as bad and eventually subsided later during the day. I don't know if the headache is relevant or not, but I might consider it my first symptom.


The day after I started to feel foggy, like my I was slightly drunk almost. Two days later my right fingers/hand/arm started to feel numb, I was having balance issues, slurring words occasionally, and just generally being "clumsy" (like dropping things and bumping into things). I went to the ER that day because I was worried maybe I had a stroke or something similar. They did CT scan of brain, EKG, blood panel - all of it was normal and they referred me to neurologist and sent me home. Neurologist was scheduled for a month later (Feb 15th).


Anyway my symptoms slowly disappeared and I was feeling pretty much 100% again a couple weeks later. I was thinking the neurologist might be pretty pointless, but at the beginning of February I had new issues come back. More brain fog, my entire right side from head down had numbness/sensitivity/pins and needles. These symptoms got worse and it was hard for me to do much of anything (I noted something simple like doing my laundry took all my energy and effort during this time). Neurologist saw me and gave me a differential diagnosis of MS and a couple other possible things. Ordered MRIs, blood work, EEG, full fury of tests.


After neurologist I had vision problems start to creep up and gradually get worse, I had very apparent double vision - I ended up wearing an eye patch which made me semi functional. Besides just double vision I had problems just seeing in general, I could see but everything seemed darker and to blend in with each other, which made it hard to focus on things especially up close.


I'd say vision continued to get worse over about a week, other symptoms stayed about the same - by the end of February my double vision was gone but vision still had some other issues that took longer to go away.


Anyway, after MRIs came back the neurologist setup an appointment the next day to go over the results (I already expected to be diagnosed with MS at this point). Sure enough, that was his diagnosis - multiple active white matter lesions in the brain, cervical was normal. He started paperwork for Ocrevus, and ordered more tests (spinal tap, T-spine MRI, more blood work, etc.). T-Spine MRI also came back normal, spinal tap was positive for oligoclonal bands which just further confirmed the diagnosis. He also did 3 days of 1000mg solu-medrol infusions, which I did even though I think my symptoms mostly resolved before I started it.


I didn't disagree with anything and did my 2 Ocrevus half-doses (3/23 and 4/7). First time I had red splotches show up on my head and a rash on my back during and after infusion (they slowed down infusion and it resolved), second time I had no reactions or anything.


Anyway, I did get a second opinion with an MS specialist at an MS center - I really liked the neuro that diagnosed me and felt bad but, I felt so much better with the second neuro - they confirmed the diagnosis, went over the MRI images and lab results with me in detail, they were way more thorough and spent over an hour with me - didn't feel rushed and I just felt a lot better afterwards. I ended up switching to the second neuro as my primary neuro - informed the neuro that diagnosed me and started the treatment plan I'd be switching and cancelled appointments (which was hard, because I really liked the guy), and I'll get future infusions/tests with this doctor at the MS center. The new neuro did indeed confirm it was RRMS as well, I already knew that but the old neuro never really confirmed it with me.


That's pretty much it, I had my first Ocrevus infusions - and will continue that with the next one in 6 months. Before then I don't really have anything else (MRI again in 4 months, follow up with the new neurologist around that time).


I feel hugely relieved that it's over with. During that almost 3-month period before I was diagnosed I was very miserable at various points and desperate for some type of help. It just felt like an eternity and like nobody could help me, constant tests and needles and nothing was getting better for me.


Now that the dust has settled, I am mostly symptom free I would say. I get occasional numbness primarily in my left foot (not sure why since all my numbness during the peak was exclusively on the right side), more frequent headaches, and more fatigue - like the fatigue will hit me like a ton of bricks out of nowhere and I'll be ready for bed, and I think some mild depression - the new neurologist scheduled me to see a psychologist at the MS center (I really like this place, because they seem to be all about overall physical and mental health)


I've been taking the suggested supplements since early February, losing some weight, and started cycling - so just finding some new healthy hobbies and working on my personal health.


I feel very fortunate in many ways - one that the new neurologist said all the lesions showed up w/ contrast (except one) which indicates newer lesions, within last 6 months. Which means I caught it early. And fortunate that these good treatment options exist (like Ocrevus), and that my current disability level is pretty much 0 I would say (I am not restricted really in any way anymore).


Obviously I don't know how the disease may progress over time, but now I am just focused on my physical and mental health, will continue the treatment, and that's about it. Happy there is many awesome communities like this one where I can get information and share information.

  1. Hi @bbedward, thank you for sharing your story. I swear, when I was first diagnoses, I learned more from my peers through their stories than I did through my doctors. This isn't to say I have bad doctors, because I have great doctors, but the day-to-day living with MS is not something they have personal experience with (not usually).

    Migraine and MS have a lot in common. Here are some articles from multiplesclerosis.net that shed some light on this:
    "The Wacky World of Silent Migraines"
    https://multiplesclerosis.net/living-with-ms/wacky-world-silent-migraines

    "Just a Headache?!"
    https://multiplesclerosis.net/stories/headache

    "Migraines and MS"
    https://multiplesclerosis.net/living-with-ms/migraines-and-ms

    I also want to add that the coming and going of symptoms is part of the unpredictability of MS. For those who are relapsing/remitting, the experience of going for a stretch feeling normal, followed by a sudden stretch of feeling "all the things" (as you described, with "cog fog" being one of the most common symptoms) is at the very least inconvenient, but at its worst, it's life altering.

    FWIW, I jokingly call myself "Miss 30 percent" because I miss 30 percent of my scheduled plans thanks to MS.

    My diagnosis was in 2013 and if I can share a couple of things that may help guide you:

    1. Learn to laugh whenever possible
    2. Reach out to friends who understand your MS when it gets bad
    3. Listen to your body and choose rest over "powering through" as much as possible

    I'm glad you found us! This is a GREAT group; we're all about living with the disease, supporting both physical and mental health, and finding ways to achieve our best lives. Welcome!

    Tamara, patient advocate since 2016

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