Ask AmberApr 24, 2020

Ask Amber: Q&A on Multiple Sclerosis

Written by Amber Lewis
Photographed by All Sorts Of

If you have been following Amber’s recent journey on Instagram, you’ve most likely read that our fearless leader was diagnosed with Multiple Sclerosis, aka MS, in early March. It’s been a trying few weeks to say the least, coupled with a global pandemic, but she has used her platform to share her experience and hopefully help and inspire anyone going through this same battle.

As Amber would say, “I’m not doctor, but I hope this helps!!” and we all know that for sure. In trying times, our hope is that being open and transparent will resonate with you, someway / somehow. Let us know if you have any more questions in the comments below and we’ll continue this Q&A series!  Without further ado….

ask amber anything: ms edition…
1.

What were your first symptons?

I would say the past 7 weeks would be my first recognizable “flare up.”  It started with some numbness in my feet, and I just generally wasn’t feeling good. Then within a few days, the numbness worked it’s way up my legs, and into my torso, and then my hands. I rarely go to the doctor, but I was freaked out and the symptoms felt very real and scary. I tried to convince myself I was fine and deep down I just knew something was wrong.

2.

Looking back, when do you think the symptoms actually started?

I have been noticing funky changes in my body going back 4+ years or so. I would get random numbness in my finger tips, and lose my balance ALL THE TIME! I just thought, it was normal and it was age, or stress. I had a million excuses and a million reasons to ignore every symptom, and chalk it up to something minor. I regret not paying attention to my symptoms sooner, but I don’t know what it would have changed… or if it would have changed anything.

3.

What is actually happening in your body when you have MS?

MS, in the most simple explanation, is a disease in which your immune system attacks the “myelin” or protective covering around the nerves in your spinal cord. This particular flare up was because I had active demyelination on nerves in my C spine. The attack from my immune system causes my nerves to fritz the F out! Which is why I had the numbness and all the other crap symptoms.

4.

Are you in pain at all?

Not really acute pain.. but there is major discomfort which creates pain, if that makes sense. Sometimes my bones feel like they are on fire, and sometimes the pins and needles feel more like stabbing… but generally I am just painfully exhausted.

5.

What led you to go to the doctors?

The ONLY reason I went to the doctor was because I was legitimately scared. To wake up and not feel your feet, and then to wake up again and not feel your legs.. was the most panicked I have ever been. I get sick a lot (another indicator something was wrong) and would never go to the doctor. A couple years ago, it literally took me being sick for 6 weeks and getting walking pneumonia to get me to go to the doctors!! When I finally went in to the doctor’s office, she was poking me in the foot with a sharp toothpick, and I was not even flinching. She ordered an MRI and also was concerned. She didn’t initially think MS, she thought maybe I had a virus.. Guillain Barre or maybe something called Transverse Myelitis, but after a billion tests it was none of those things.

6.

What form of MS were you diagnosed with?

I have RRMS, which stands for Relapsing Remitting Multiple Sclerosis. It’s the most common form of MS, and even though there is no cure, it can be managed and treated. An on-call doctor in the hospital said I just had the standard “Run of the Mill” MS. I wanted to knock him out, but I realize he was just trying, in a really shitty way, to make me feel better. Literally, what an Ass Hat! He is not my doctor, thank god! Ha!

And for the record, there is nothing standard or run of the mill about this disease. Maybe he should wear a really tight rubber band on his hands and feet and torso for a month, and see what that feels like to get the circulation back!!!

7.

How were you diagnosed? Was it a blood test of MRI?

I started with an initial MRI with and without contrast on my Cervical spine. This was ordered because I went to the doctor with the ascending numbness symptoms. When the results were read, they noticed “Plaque like lesions indicating active Demyelination” in my C spine. My doctor urged me to go to the ER to start the “work up” and get all the tests as soon as possible. I was so freaked out, I waited a little longer to go then I should have, but once I was there, the testing started. I had a 2 hour MRI. They scanned my brain, my C-Spine, my T-Spine, and my eyes or “Ocular MRI.” That showed multiple lesions in my spine and 2 in my brain, with none on my eyes. I stayed the night in the hospital where they monitored me and took a ton of blood. Then they ordered a Lumbar Puncture, where they got spinal fluid from my spine… yes, with a freakin’ needle while you are awake.

I guess MS is hard to diagnose, and you have to test a multitude of things in order to definitively diagnose, and therefore treat you for MS. I was tested for Lyme, NMO, Guillain Barre, West Nile, JC virus… meningitis. Literally every “itis” or virus I could be tested for, I was. I had all the common markers that indicated MS and after looking at the full picture, MS was diagnosed. I had also recently seen a functional medicine doctor who checked my metal levels, thyroid, hormones, vitamin deficiencies, and those were all what they were, but nothing alarming or cause for concern. So yeah.. I have done all the tests!!

8.

Is the process of being diagnosed very invasive? How did you learn it was ‘for sure’?

Yeah… it blows. I had 71 tests run in 24 hours. MRI’s, spinal taps, blood, urine… I was poked and prodded so many times. It sucks, but I am grateful we found out what the hell was happening to me.

9.

Is there a typical length of time the first flare up lasts for those new to MS like you?

NO! I wish! I am on week 7 of numbness and fatigue. This flare has kicked my ass.. but it’s really the only flare I know. I have heard stories of lasting hours, days, weeks, months and years! I hate the unknown.

10.

Have you changed your diet since your diagnosis?

Yes and no. I am a very healthy eater by nature. I have been off and on vegan for years, and I am sugar and gluten free. I know that the Wahl Protocol is meant to be a life changing diet, and I have been trying it out. Honestly, the meat part of it… is hard for me. I just don’t love it, or digest it well. I have been eating smaller portions or grass fed beef, and lots of fish. Chicken kinda grosses me out, so am avoiding that. I eat a lot of veggies… and take a billion supplements.

11.

Are you starting Tysabri or Ocrevus infusions?

No, my doctors advised against those, as they are very immune suppressing, and with the coronavirus, they didn’t think it was a great idea. I am waiting for a second opinion on that, but for now I am starting Tecfidera.

12.

How did you feel when you found out?

Mixed emotions for sure. It was stages of grief. First was denial. I was convinced I had a pinched nerve, even though my spine and brain were covered in lesions. The I was sad… really sad. Then scared, then pissed, then scared again… then denial.. haha. It’s been a roller coaster. I have been weirdly positive though, and feel deeply that you are only ever given what you can handle. I am being tested, for sure.. but I think I can do this. I have so much support.

13.

What was your family’s reaction?

It was heartbreaking. Understandably, everyone was just generally scared, and confused. It all happened so very fast, and in the midst of us moving into our new house and the COVID craziness. My whole family, especially Mike, have been incredibly supportive and helpful. It’s been an adjustment to be needing so much help, but everyone has come through for me so much.

14.

Does anyone in your family have it?

Yes. My dad’s sister was diagnosed when she was 17! It’s technically not hereditary, however there is genetic risk that may be passed down.

15.

Age of diagnosis?

38 years young!

16.

How are you dealing with all of the change?

The hardest part for me has been the slowing down. It’s crazy to think the whole world shut down the week of my diagnosis, and it could not have come at a better time. I suffer greatly from FOMO.. especially work FOMO, but my team is the greatest on earth, and they have been holding it down. They always do.. but they took it to a whole new level! I know/hope I can learn to listen to my body more, and slow down. I for sure work too hard, stress too much, and am a self admittedly control freak! Delegating is just what has to happen. Someone said to me, you have spent your whole life busting your butt building your biz and making sure others were taken care of… they can take care of you now. And that stuck with me. Hopefully I can put my health first for a bit.

17.

Have you been doing any alternative healing or supplements to help you feel better?

Yes!! Holy Moly have I ever. I take all the B vitamins, a high dose of D and K to make it all absorb. I take adrenal support, zinc, biotin, magnesium, calcium, milk thistle, lysine, beta glucan, PS 100, EPA/DHA, CBD, Chlorophyll, Monolaurin, MCT oil… and some herb for liver function and digestion. OH and probiotics. It’s a lot, but I am willing to try everything I can!

18.

Does this affect your career long term being a designer?

I am gonna say definitely NOPE!! I have built a company that needs me, yes.. but I don’t have to kill myself to make it run!!! That’s the whole point of growing an awesome team! I am still involved as much as possible. I will just have off days, and that will just be the new normal. My incredible team has my back, and are responsible for SO MUCH already, this diagnosis is just me personally slowing down when I need to and being honest about my availability to clients and my team. So far, besides COVID, it has been business as usual… I have just asked for a little patience while I figure this new diagnosis out. I didn’t come this far to only come this far!!

19.

How will MS impact you in the long run, generally speaking?

No one knows. I hope with time a cure will be developed, as right now there isn’t one. I expect to live the best life ever… gonna stick with that for now :)

20.

How are Gwynnie and your husband doing?

They are being incredible A+ champions and the absolute best. Gwynnie is genuinely the most caring and compassionate kid I have ever met. She always has been, but this has really shown her true colors. And Mike is handling it like a champ. He is patient and loving, and not 10 minutes goes by where he doesn’t ask me if I am OK or need anything. He is also handling all the cooking and house stuff right now… so yeah. I lucked right out.

21.

What’s on your heart to share with us?

I think the biggest thing I have learned and want to share is the reminder of just how much your life can change in a second. 7 weeks ago… I was on top of the world. About to move into our new house, biz is booming, we were opening a new store, and G was almost done with 4th grade. In an instant, my perspective was shifted, and all the shit we thought that mattered so much… just didn’t anymore. I will always be driven, and I will never be weak… but I have to learn to put myself and my health somewhere closer to the top of my to do list! I have learned that asking for help, does not make me needy or less capable. It just means.. I need a little help. I also can lose the control of it all and just roll with it!

Comment

  • Marlene.

    I’ve commented many times on your MS posts as I have RRMS as well Just wanted to share a few more things that I’ve thought of.

    1- when the time is right, go an MS support group. My first year I was invited but said I “didn’t need that”. Wow was I wrong. It is sooo wonderful talking to other proper who know 110% what you’re going through and have unconditional support and advise I’ll never ever regret going to meet with them. Through that group, I was recommended an AMAZING doctor that nearly all of my MS support friends in Estevan see. Dr. Pilay. I had to ask my GP for a referral to him as at the time, I just had the Neurologist that happened to be on call the day I was sent to hospital as my neurologist and he SUCKED. The waiting list was over a year old but MAN it was the best decision EVER. I HIGHLY recommend Dr V Pilay if you ever feel the need to change Dr’s. He has tons of MS patients, he’s kind, amazingly intelligent, totally on top of MS research and I trust him litterally with my life. 306-525-8612.

    2- get copies of all your medical records. When I was first diagnosed and went through all the battery of tests that you did, I called everywhere that I went and asked them to send me all the doctors findings so I could have it for my records. I even have a copy of my original MRI. Some of iy I needed for insurance purposes but I also wanted it as my memory is now effected by MS and if I need to remember something about my original diagnosis I have the paperwork trail. I found myself having to tel every bloody doctor I saw the whole story again and again and frankly it was hard to remember

    3- your doctor and your MS nurse contact will watch your blood work on Techfidera but I always got copies of my blood work every 3 months in case things were changing and I could ask questions. I didn’t last long on Tech as I had some complications from it but was the only DM I’ve ever been on.

    Anyways I know we’re strangers and it’s kinda rude maybe me sending you this but I just wanted to share that with you. I know exactly how you feel and I know it’s hard. Hers a poem I wrote about my experience.

    I’m That Girl
    that you see
    hobbling across the street
    wishing I would hurry
    That Girl.

    I’m That Girl
    that can’t see
    that squints and struggles
    wishes glasses would fix it.
    That Girl.

    I’m That Girl
    who forgets a name a face a memory
    and wishes a note would help.
    That Girl.

    I’m That Girl
    that sways and teeters
    you think is drunk or clumsy
    that just wants to be stable.
    That Girl.

    I’m That Girl
    who winces and cries in pain
    that swears under her breath for it to stop
    that you think isn’t tough.
    That Girl.

    I’m That Girl
    who needs to rest
    but just can’t sleep
    that you think is lazy.
    That Girl.

    I’m That Girl
    that just wants to know
    who just wants a turn
    to feel like she felt
    Before.
    That Girl.

    I’m That Girl
    who’s afraid of what’s to come
    who’s thankful every day
    for that step
    for that breath
    for that chance.
    That Girl.

    I’m That Girl
    that walks that climbs
    that runs that laughs
    that works that learns
    that supports that loves
    that hopes that dreams
    THAT FIGHTS because I can
    I’m That Girl.

    #teamfight

  • Tracey Gaudette

    Thank you Amber for sharing your journey with us. In addition to all that you are doing please know that even complete strangers, like me, are praying for you and sending positive healing thoughts to you!! Be well.
    🙏

  • Laurie Fox

    Thank you Amber, and others, for sharing your story. As a lover of design, in all its forms, I have been following you closely and love your postings.

    I was recently diagnosed with having ALS and I too was shocked , sad, angry, etc. I’m learning to live with it. In comparison to your MS my disease isn’t so bad, except for the short life span thing.

    Keep sharing, believe me, you are making a difference to many that you don’t even know.

    Hugs, Laurie

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