Managing Multiple Sclerosis: 9 Symptoms that Led to My MS Diagnosis
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A simple trip up the stairs told Don something was wrong. Here’s his story of how 9 symptoms developed over 25 years, including early warning signs that delayed the answer, eventually led to a Multiple Sclerosis (MS) diagnosis.
This is Part 1 of our Managing MS series. The other posts in this series include:
Part 2 – Healing MS: A Real Patient’s Story of Actually Improving After a MS Diagnosis
Disclaimer: I am not a doctor or medical professional. This site is for informational purposes only and does not provide medical advice.
“Ah Crap! I’m going to be late.”
He rushes through the turnstile, dashes through the double doors, and bolts for the stairwell.
“Come on… almost there, 2nd floor conference room.”
Just as he makes it to the bottom of the stairs, ready to ascend… something is off. His brain is telling him to keep going, his arms are pumping, and everything “feels” like he is moving quickly.
His legs, meanwhile, are moving in slow motion beneath him.
“What the heck?”
You just experienced the first symptom with him. Immobility, or a lack of muscular response from base commands.
He says “Legs, run.” And his legs only walk.
Who is this mystery man, and why is his body rejecting standard commands from his brain?
Meet My Friend Don
For those of you who don’t know Don, he is a 49-year-old man with flowing blonde hair (normally kept in a ponytail), beautiful blue eyes, a tall, thin frame, and a memory like an impenetrable steel trap.
He is also one of the kindest people I have ever encountered, a faithful Christian, and a loyal friend (not unlike a dog).
But what really sets Don apart is his story.
Don’t worry, it’s not sad! In case you weren’t in the mood for a tear jerker. In fact, you might even laugh or shake your head while you marvel at how a man of his accomplishments and intelligence made it so far, while neglecting something so valuable…
So, without further ado! This… is Don:
(Those awesome glasses are his blue-light blocking glasses to help him get a good night’s sleep.)
But let us depart from examining Don’s outer-radiance and focus inside. Let’s find out how Don discovered why his legs wouldn’t climb the stairs on that seemingly normal day. The day that led to the diagnosis of his Primary Progressive Multiple Sclerosis.
Our First Encounter
I met Don in 2015, when we were working for the same company. We spoke periodically, but nothing more than a few chuckles about silly work things and the normal 9-5 banter.
But one day in June of 2016, Don rolled over to me in his desk chair and asked me why I ate the way I did. We talked for a bit and he explained that he had just been diagnosed with MS.
I didn’t really know what to say. I wasn’t particularly versed in his specific autoimmune disease, and hadn’t yet started my intense dive into understanding autoimmune living (other than my own of course).
But eventually my intrigue grew and we started talking A LOT more about lifestyle. I enjoyed talking to him because we both shared an autoimmune bond, and I felt comfortable bringing up my learnings. Soon, I started asking him if he would ever consider implementing lifestyle changes to manage his disease.
Normally, he just brushed off my attempts. Then, miraculously one day, he said maybe. I snatched up the opportunity, dragged him into a private room away from our other co-workers (who would laugh at things like healing diets) and laid it all on the line.
After months of dropping hints, Don said yes to me. He was finally willing to try and revert back to a healthy, healing way of life. From that day, he was hooked and hasn’t looked back since.
Because of his progress, I’m like a proud father of a MUCH older son (love you, Don!).
But what symptoms led to his diagnosis? It’s no secret that an autoimmune disease can have some pretty weird clues that you might not connect at first. Don’s symptoms definitely fit this bill.
Don’s Dark Past
Don grew up in a very conventional home-setting. For instance, his mom cooked breakfast, lunch, and dinner every. Single. Day! Can you imagine how healthy little Donald must have been? And he was!
Specifically, all the way through high school, he did NONE of the following:
- Drink ANY alcohol
- Use tobacco
- Take drugs
- Drink a single can of soda pop
- Consumed almost exclusively home cooked meals
Raise your hand if you had that clean of an upbringing… I thought so.
And then Don graduated high school.
College came along and trashed Mom’s hard work, beat it up and took its lunch money. College life looked a little different for Don:
- Steady drinking
- Chewing tobacco
- The introduction of 2 liters of Mountain Dew per DAY
- Pizza and fast food became the staple of sustenance (or lack of)
- I’ll add my own: UGH
This period of his life was a rapid and shocking change to Don’s frail body. The results were telling.
Don’s First Multiple Sclerosis Symptoms
Just prior to departing for college, Don began to notice his reflexes being very sensitive, perhaps on the same level as… a superhero?!
An example of his Spiderman-like reflexes are best explained by a story that happened later in Don’s life.
He was always a bit of a grease monkey (he likes working on cars). One day, he was repairing the rear differential on his truck in the garage. He was on a crawler (the thing with wheels that allows mechanics to slide along the floor on their back) and his head was about 6 inches from the rear axle of his truck and 4 inches from the floor.
He had a large light shining onto the area he was working on and something caught his attention out of the corner of his eye. It looked like a GIANT spider! He quickly glanced over to see that his eyes were not playing tricks on him (completely).
Fortunately, the light had made the spider look larger than it was, but Don’s insanely fast reflexes caused his head to bolt forward, which made him strike his head on the axle 6 inches above him.
And… every action has an opposite reaction.
When he hit his head, it made him throw his head backwards, causing him to hit his head on the floor beneath him.
And… every action… has an opposite reaction (I’m shaking my head now).
After he hit the floor his head hit the axle again. And then the floor. And then the axle. And then the floor. I don’t even think Don knew when it stopped, but finally his wife came running into the garage to ask…
“What the HECK is going on out here?!”
Don had to fess up that a spider scared him and caused him to hit his head about fifteen times. Fortunately, he was okay… but the takeaway from this story is that his super reflexes were actually an uncommon symptom of MS called brisk reflexes or hyper reflexive muscles.
This may have been his first symptom, but once he made it to college and his lifestyle changed for the worse, other symptoms appeared rapidly:
- Chronic anxiety – typically caused by exams or essay preparation.
- Uncontrollable diarrhea
- Not being able to hold his bladder consistently
He struggled with these symptoms for almost 25 years, but college ended and things stayed pretty much the same. Then 2013 rolled around and a new set of symptoms rolled in.
T-minus 3 Years to D(iagnosis)-Day
As if pooping your pants and possibly wetting them wasn’t bad enough (something I am all too familiar with…), life threw some curveballs that made Don and his family seek the attention of a doctor.
It started with his legs losing sensitivity, and feeling like they had tight socks on them. Imagine a firm pressure constantly applied to your legs. That is what Don felt constantly, and his wife made sure he asked his doctor about it during his next physical.
His doctor checked B12 and iron levels, but everything came back normal.
T-minus 2 years and the desensitized feeling traveled from his legs to his torso.
The alarm bells finally started going off in Don’s head and he reached out again to his doctor. This time, he was sent to a neurologist for an EMG (Electromyography) to measure his peripheral nervous system.
The theory was that his peripheral nervous system was reduced in function and causing his lack of sensitivity. Only problem with this theory was that Don was a rock-n-roll loving superhero…
A head banging (on truck parts and the floor) rocker at heart, Don’s ultra-sensitive reflexes jumped off the charts when they were measured. So much for the concept that his desensitized nerves resulted from his reflexes.
Since his peripheral nervous system wasn’t the cause, the neurologist decided to check the central nervous system.
T-minus 1 year and his tremors worsened.
During a dirt biking trip (Don did so much cool stuff throughout his life) he tried to keep his normal pace but found it nearly impossible to do so. The problem… going fast on a dirt bike (as you can imagine) requires everything to happen at the right time.
As Don flew into a corner, he quickly found that he couldn’t shift normally which meant his brain wasn’t sending the signals to his legs properly.
After this, the final cascade of symptoms rained down.
- Hand tremors got much worse
- Immense pressure and stress while working at a company he didn’t want to be at
- The stair running incident (like the shifting)
- Shaky legs and further instability during a ski trip
After all this, he met with his neurologist one last time and finally got the answer he needed.
The Primary Progressive Multiple Sclerosis Diagnosis
More than 25 years of dealing with bathroom incidents (if he even made it to one), intense tremors, anxiety, balance, instability, and loss of motor function, Don finally received his diagnosis.
It came after an MRI revealed one lesion on his brain, but was determined to be inconclusive. So, his doctor did a lumbar puncture and found multiple lesions on his spine.
The doctor was finally able to affirm that Don had Primary Progressive Multiple Sclerosis. Surprisingly, he was relieved to finally know what had been ailing him all these years. Now, he just needed to take action.
From Chew and Dew to Everything New
(Yes, I tried my hardest to make that heading rhyme…)
Don’s symptoms were pretty telling when you look back. But they progressed over such a long period that it made it nearly impossible for anyone to pinpoint the problem.
Sadly, this isn’t uncommon. On average, autoimmune diagnoses take 5 years and 6-10 doctors before receiving a proper diagnosis.
Plus, Don’s awesome upbringing gave him a certain level of protection from his college and post college lifestyle of fast food, and “chew and dew” (chewing tobacco and Mountain Dew).
But in case you don’t recall – I mentioned how proud I am of Don. That’s because he lives the vision that Anna and I have for anyone with autoimmunity – a life where he calls the shots and does not let MS win the battle for his health.
Don became his own advocate, and made some very intense amendments to his life so that he could manage his MS and hopefully one day reverse it. A teaser for you… he retired from a lucrative career as a renowned engineer so he could focus (at least for now) fully on healing.
The real question is… what’s keeping you from taking similar steps to conquering your autoimmune disease?
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Hey there! I’m Frank, co-founder of Healthy Habits Reset. My wife, Anna, and I have battled our respective autoimmune diseases for over a decade. We have fumbled through and eventually learned that REAL mental and physical healing requires you to be your own advocate, to think for yourself, and to determine what information works for YOU.
We created this blog to teach everyone how to use the resources and tools available to make the best personal decision surrounding any health, faith, and lifestyle choice.
Very nicely written and way to go Don on your journey.
Thanks, Barbara. It was a fun article to write. Don and I grew very close during his journey and I’m honored to call him one of my closest friends. I’ll pass along the congrats to him!
It’s been almost a year, how is Don doing now? Could you do an update? If he is doing well, it would be informative to those of us who have MS.
Debbie, that was the nicest I have ever been yelled at. LOL! I will absolutely write an update post on Don’s progress. And a little foreshadowing – he is doing VERY well. More to come, and soon ☺️
Hello Frank first of all I’d like to say thanks for your article, I’ve had Ms for 22 years now and I’ve been on capaxone injections for ten years, I’m now on TECFIDERA, I’d really like to know how you’re friend Don is as I’m heading into the secondary progressive multiple sclerosis stage, I’m a big supporter of people like us and would really like to send him blessings of love and light to continue with his journey
Well, Michelle… thanks for your kind words! Don is actually still doing well. He did have a very difficult life event recently that set him back slightly, but he was able to re-engage with his lifestyle efforts, and is feeling great again. I will pass along the blessings for you, and God bless you too!
Thank you for the article you wrote about a near and dear friend. I work in Nursing and stories like this are important. Sometimes you walk in to find a person who is disabled, crippled and not able to do many things like before. Understanding where they have come from brings that connection that they once were healthy and had that taken away. Love and compassion for our patients who suffer this terrible disease but still have a life to look forward to and friends and family they love.
Hi Laura, thank you for the comment!
Thank you , Frank for the article you wrote. I am not surprised how long it took him to finally get diagnosed. I know MS is more prevalent in women. I do know they are working on more new drugs. For I too have PPMS. I must of had it for a good ten years before getting diagnosed. It’s so easy to call it clumsy or I just forgot. It’s only when your symptoms starting to get worse is when you sit up and start to notice. I wish Don the best and tell him he can always get answers to questions he has going on by joining BelongMS. There are several men and women whom have different things going on with themselves. They give support and he can read about what new trials they are doing. Regards Susan
Thanks for the comment, Susan! I appreciate the BelongMS resource you mentioned. Also, Don is doing so well – you can read more in our follow-up post here.