Where exactly do you start when someone asks you about your diagnosis of Multiple Sclerosis?
Do you start with the first symptom you experienced?
Do you start with the sinking feeling when you knew something was really wrong?
Or do you start the moment you finally heard the words, “You Have MS?”
My MS story starts on New Year’s Eve.
My mom was on hospice and I was living one of the hardest years of my life
That’s when my doctor called to tell me I had Multiple Sclerosis… something we weren’t even testing for.
Let me backup a bit to give you even more context.
My First Abnormal MRI with MS
As I said, that December still ranks as one of my toughest months I’ve lived through.
My mom was on hospice and our last Christmas with her was spent rushing her to the hospital.
It was gut wrenching.
The level of emotions running through my body were palpable.
I felt like I was always one moment away from my world collapsing.
The only way I knew to manage this level of pain and emotions was through exercise.
It became an escape for me.
It had always been my go-to stress reliever over the years, but now it became a lifeline for me.
It was the glue that held me together.
One thing that worked in my favor, is at the time, I was leading the nutrition department at a local health club, and there was an amazing gym just outside my office.
So, I worked out with a lot of the personal trainers there.
I loved it. It was my escape.
I was with my friends, there was always good music playing and all those endorphins were firing from the workout.
But then, I started getting exertion headaches during my workouts.
I had migraines since elementary school, so I didn’t think much of it.
I thought it was just the stress of everything.
But, something told me to book an appointment with my neurologist.
So I made the appointment and she did her usual evaluation.
At the end of the appointment, she suggested that I get an MRI since I hadn’t gotten one in a little while.
So I took the script, scheduled the appointment and then the day of the MRI, I told my family that I was going to happy hour with friends.
I was not about to tell my family that anything was going on with my health – especially when it was just a routine scan.
I didn’t think twice about the results.
I really didn’t.
I had so many MRIs over the years because of my migraines and my neurologist was very matter of fact about ordering the MRI too.
It really just seemed like she was following routine protocol.
She was checking off the boxes.
Well, by the time New Year’s Eve rolled around, my mom was stable in the hospital and my dad was with her.
So I decided I was going to meet up with a few friends.
As I was in my room getting ready, I get a call from a blocked number.
It’s gotta be my dad calling from the hospital, right?
My Neurologist’s Call on New Years Eve
It was my neurologist.
“Hi Alene! I just wanted to let you know we got the results of your MRI and the radiologist thinks it’s MS. I’m not totally convinced, but we’ll need to do some more tests.”
I didn’t even know what MS was.
My brain pretty much just shut down the idea.
There was no way I was going to get diagnosed with some incurable disease while my mom was dying.
That would be too cruel.
So, I finished getting ready for my night out and acted like nothing happened.
I didn’t tell anyone.
But I knew I needed to do the follow up tests.
So I scheduled those appointments… We all know how many different appointments it takes to get an MS diagnosis, right?
Well all my tests came back inconclusive.
This is a totally side note, but I was shocked at the fact that there was no single test that could definitively say if I had MS or not.
That’s a whole nother tangent for another episode!
At this point, I decided to hold off on any more doctor’s appointments.
I didn’t have any big MS symptoms (or at least, I didn’t think I did), but my mother was dying.
I wanted to spend time with her so that’s what I did.
Testing for Multiple Sclerosis
Almost immediately after she passed, there was something inside of me that pushed me back into the appointments… more appointments… more copays… more pre-authorizations… more calls to the insurance company… more time away from work.
So, I did another round of MRIs, a spinal tap and met with a new neurologist who specializes in MS.
Waiting for these results… that was though.
I was in the thick of grief, trying to picture what life looked like without my mom.
Now I was also having to think about a life with MS?
That was a tough one to swallow.
I needed something to do in the waiting.
Now I’m the type of person who likes to have all the facts, so I started researching online. We all know how that goes, right?
You end up seeing all the scary worst case scenarios.
That’s not helping anything!
Then, I started listening to a book about MS.
I didn’t have to face any images, I just hit play while I was driving one day.
So I’m listening to the author’s early experiences with MS when she started describing these facial pains.
She talked about these electric-like jolts on the side of her face.
They’d come in waves and get worse when she was stressed.
That was the moment it hit me.
That was when I knew I had MS.
I Knew I Had Multiple Sclerosis
Tears started streaming down my face.
I knew exactly what she was talking about.
I’d felt those same pains over the past couple of years.
Out of the blue, it was like being zapped with electricity directly into the side of my face.
I’d never mentioned them to the doctor because they’d disappear as quickly as they came.
I just brushed them off as some weird side effect of migraines.
But now, they had a name – trigeminal neuralgia.
I thought, “Alright, Alene, this is it. You have Multiple Sclerosis. You’re going to figure this out.”
So, at this point, I told my dad and sister about what was going on, and they came with me to the appointment.
The neurologist went through my MRIs, the spinal tap and then started asking, “Do you ever experience:
- Brain fog
- Urinary frequency
- Urinary urgency
- Heat intolerance
- Facial pains
My answer was Yes… yes… and yes.
“You Have MS”
Then he very matter of factly announced, “You have relapsing Remitting MS.”
Just like that, there it was, a conclusive diagnosis.
No hesitation, like my initial doctor.
This one specializes in MS.
All of the months of uncertainty led to this moment – one sentence that changed my life.
You have MS.
And as odd as it sounds, the first thing that really hit me was his question about heat intolerance.
Is MS why I always felt so weak after a hot yoga class?
I loved hot yoga, but I’d be totally wiped for days afterwards.
Everyone kept saying it was just a hydration issue.
But I’d tried everything – a gallon of water, coconut water, even pickle juice.
It wasn’t hydration.
It was MS.
And now I had the diagnosis to prove it.
In a weird way, as I know many of you can identify, it felt validating to finally have an explanation for all the random symptoms I’d been having over the years.
I thought back to all the urology appointments I had over the years.
The facial pains.
And brain fog – now there was a real term for it… because it was real.
Oh the fatigue.
It WASN’T “laziness.”
I immediately thought back to the time when I was so fatigued I could barely get out of bed for weeks.
It didn’t make sense. Now it did.
But I remember at the time going to a specialist in NYC to try to get answers and at the end of the appointment I burst out in tears, because the idea of having to walk to the train station was so overwhelming.
I wasn’t crazy.
I had MS.
I know I’m not alone in this experience – we have the date we were diagnosed with MS but then we have memories of all the symptoms we experienced for years prior.
It really hit me how hard I had been on myself over those years.
I kept trying to push through the messages from my body.
I had no idea they were signals of something bigger… of MS.
Did you know that ¼ of people diagnosed with autoimmune diseases were initially labeled as hypochondriacs.
It makes complete sense.
Now it all made sense.
I have MS, Now What?
Okay so I have the official diagnosis, now what?
The flood of ‘what ifs’ came rushing in.
What’s going to happen to my body?
Will I have to quit teaching yoga and working out?
Will I end up in a wheelchair?
Will someone have to take care of me like we did with mom?
That last one really hurt… and still stings as I say it today.
I felt a wave of guilt wash over me.
For years we’d been living in six-month, then three-month periods between her scans.
Was I dragging my family right back into that?
MS is so unpredictable, I didn’t know what to expect.
It was as if my body had turned into a stranger too.
I didn’t know what it was about to do, I felt like I couldn’t trust it anymore.
The Crossroads of an MS Diagnosis
At this point, many of us find ourselves going down one of two roads.
Hyper focus – obsess – over the things that we can control in our life, because we want a sense of control at any cost. We’re constantly on edge, because fear has taken over.
Find ourselves paralyzed by fear and the lack of control. We feel stuck – like we’re in this thick mud that is preventing us from taking even the smallest of steps forward.
Eitherway, we don’t know how or where to start to put our life back together… or should I say, how to start putting a new life together, one that now includes Multiple Sclerosis.
My mind went straight to food.
I had been studying nutrition for all these years and food had helped me so much with managing migraines, there had to be SOMETHING I could do with food.
So I asked my doctor.
We all know how the conversation goes…
I asked, “What about my diet? Is there anything that will help?”
“Eat whatever you want,” he said. “It won’t make a difference.”
My blood boiled.
I fired back, “I’m a nutritionist, and I know that food changes how I feel in my body.”
He said, “It’s certainly not going to hurt you, I’m just saying it’s not a cure.”
He didn’t get it.
He didn’t understand what I was asking or what I was doing.
And, to be fair, I didn’t fully understand it at the moment either.
On the surface, I was asking about food.
But what I was REALLY asking for… was something that I could control.
Everything felt out of my control.
I just lost my mom and now I have an incurable disease.
I wasn’t searching for a cure.
I was searching for hope, for control, for a way to keep being me, despite MS.
And for me, this started with food.
It was within my control and I knew it could help me feel better – even if it couldn’t cure me.
Now we’ll dive deep into the details of food and diet in future episodes, but I wanted to put this out there because maybe… maybe, it rings true for you too.
Maybe you’re looking for something that’s within your control too.
What I Focused on First
We all get to choose where we go in moments like this, but I want to share with you what I chose – not to suggest that it’s the right thing – or that it’s the right thing for you – but because it’s made a world of difference for me not only in that moment but in all the years have have followed.
So I mentioned, the first was food.
I actually didn’t look at it as an alternative to medicine.
I really looked at it as something that would just help me feel better – especially with all the possible symptoms of MS – specifically the fatigue and brain fog.
It wasn’t until later that I realized that it actually did have the potential to influence the progression – or lack thereof – of MS.
That came with time.
But like I said, in the beginning it was just something I could control – and start changing… the minute I walked out of that office.
We’ll definitely talk a lot about food on this podcast, but while we’re on the topic I want to remind you that you don’t need to do a complete overhaul to get results.
That’s one option and will likely get you results fastest, but if it’s not sustainable, it doesn’t matter.
Most people do best starting small.
So maybe you ask yourself right now – what is ONE thing you can start doing today that will help you improve your diet.
Can you add one more serving of veggies to your dinner plate?
Can you have fruit as a snack instead of chips?
Can you have one more glass of water a day.
Big results can have beginnings as small as this.
Don’t underestimate them!
My Care Team
Okay, so the next area I focused on was my care team.
I was introduced to functional medicine long before it was a thing.
I mean I remember as a kid going to an herbalist, chiropractor, reiki master and so much more to manage migraines.
I also embraced conventional medicine when I was in the throes of a migraine. To this day I haven’t found a single natural remedy to break a debilitating migraine.
Food helped me to reduce the frequency and the intensity of the migraines.
Medicine helped to get me out of an active migraine.
So the idea of building a bridge between conventional and functional medicine was the norm.
So I figured that’s how I would approach MS.
Everything is always determined on a case by case basis.
So that required a good care team.
Top of that team was me – not my doctor.
He might know MS best, but I knew my body best, so I needed someone that would work with me.
Because a diagnosis is such a worldwind, we don’t always have the time, energy and clarity to really get second and third opinions.
And if I’m being honest, my neurologist had an AWFUL bedside manner.
He has a pretty bad reputation for it actually.
But I knew he was good from a clinical perspective, so I settled for him for the time being and started to build out the complementary care that I would need to support my current health and future health.
And, of course, this has evolved over the years.
Last but not least… actually it is intentionally last because it’s the one that I wanted to face the least.
I knew things had to change.
And I remember sitting with my neurologist, hearing about MS and thinking – I need to make some major changes in my life.
There’s too much on the line now… like my BRAIN!
I literally had to protect my brain.
Now I was – and still am – very determined to do everything that I can to keep this disease from progressing.
But just as my head was swirling – and starting obsessing over all the things I was going to do – I realized how tight my chest and my body was.
Typical me, ready to plow right through this with all my might and strength.
That determination has served me well over the years.
It’s been my greatest strength.
But it also was my weakest link.
This Type-A overachiever, personality and mindset, had its advantages but it wasn’t sustainable.
It created too much stress, unrealistic expectations and led me to ignoring the whispers and ultimately the sirens from my body.
I had to take a different approach.
I can’t white knuckle my way through MS.
We’ve all had those moments of desperately trying to grab the steering wheel in life.
I felt like I was always white knuckling my way through life.
I like feeling in control – not in a sense of power – but in the sense of finding comfort in a predictable outcome.
And now life handed me an incurable, unpredictable disease.
God really has a sense of humor, doesn’t he?
But He also uses everything in our life?
Nothing is wasted.
And my diagnosis was no exception.
This was a tug-a-war between me wanting to control it but also me desperately wanting to be comforted and assured.
This ultimately prompted me to start leaning on my faith a lot more.
It became the seed that ultimately grew my faith into something that finally felt so real and personal to me.
It was the only thing that felt solid and brought me comfort.
Now I know we all have our own personal journeys with faith and spiritual practices, but I genuinely believe that in these moments of uncertainty and chaos, finding strength in something bigger than you… allows you to take the pressure off of yourself – release the expectations that this is all on you to figure out.
I also had to start listening to my body more.
We live in a world where we constantly push ourselves to be more, do better and finish faster.
I had to unlearn the pace of the world and find my own rhythm.
And I invite you to start doing the same.
What if MS became our greatest teacher to pause and be in the present… not always 10 steps ahead?
Right now I want you to think of one thing that feels overwhelming to you and maybe causing you stress.
It could be a project, a relationship, anything – identify one thing.
And now think of your one next step with it.
Can you give yourself permission to just focus on that?
Can you let go – even if temporarily – of all the other steps that will come afterwards?
And of course breathe.
A deep breath is always an easy way for me to interrupt stress in my life.
An Unexpected Tale
Well, this certainly is a story I never thought I’d be telling.
But I hope that you found it helpful.
We each have our unique stories. They shape us. They teach us. And they connect us.
And I hope that’s what sharing my story did for us today.