You Were Just Diagnosed with MS. Now What?
- Joe Weber
- Nov 3
- 9 min read
Recently, someone my wife and I know started going through a familiar and frustrating process: endless doctor visits, confusing symptoms, and no clear answers. Based on what we’ve heard, it sounds like Multiple Sclerosis may be the diagnosis they’re facing. Seeing them go through this reminded me of my own journey and just how overwhelming those first few weeks can be.
So I wanted to write this, not as a doctor or scientist, but as someone who’s been there. If you’ve just heard the words “you have MS,” I know how heavy that moment feels. I also know the strange sense of relief that comes with finally having a name for what’s been happening to you. My hope is that by sharing what I’ve learned, I can help make your next steps a little clearer, and maybe, a little less lonely.
This is going to be a long one, so... Sorry?
The Long Road to a Diagnosis
For many of us, getting diagnosed with Multiple Sclerosis doesn’t happen overnight. It can take years of unexplained symptoms, endless tests, and frustrating “maybe it’s this” conversations before you finally hear those three words: you have MS. It’s rarely a straight path. For a lot of people, it’s an exhausting one filled with doubt, confusion, and sometimes disbelief.
My own story is not much different, although I am one of the lucky ones that got a diagnosis in months, not years. It took about 9 months to get a diagnosis. Here's how it went:
Weird thing Number 1
It all started when I was vacationing with my wife on a cruise in the Caribbean. We were standing on deck looking out at the ocean, normally a beautiful sight, when a shock wave traveled through my body when I looked down at the floor. I almost collapsed at the shock; no pun intended. It was such a surprise and a weird thing to happen, but I just brushed it off like the normal guy thing to do. Well, at least that’s what I normally do. I spent the trip being careful not to bend my neck because if I did that’s when I would get a jolt. After several weeks it hadn’t gone away and I started to think that maybe I pinched a nerve in my neck. Most of the research that I did about that ailment made me think that if I just took it easy it would clear up on its own eventually. I never reached out to a doctor when this was happening.
Weird thing Number 2
About a month or two after I had my first experience with my neck, I started getting dizzy. It wasn’t a room spinning dizzy or an “I’m a little drunk and might fall over” dizzy. It was more like my equilibrium was a little off and I always felt like I was a little off balance. I let this go on for about a month until I saw a doctor. The family practice doctor chalked it up to an inner ear infection. We let it go for a little bit longer to let it clear up.
Weird thing Number 3
This was by far the weirdest one. My left leg started feeling “fuzzy”. It never went completely numb but it always had a strange fuzzy sensation. If I was in bed and the sheets touched my leg it felt like I had let my leg sit in a bucket of ice until I just started to lose feeling. In my mind this was just another pinched nerve and I never put too much thought into it. I hadn’t even considered going to see a doctor about it at first. I let this go for a little while before calling the doctor and scaring everyone because they thought I was having a stoke.
Weird thing Number 2 (again)
The dizziness never went away so after about a month of waiting for it to “clear up” I reached back out to the doctor who then referred me to an Ear, Nose, and Throat specialist. At that point we ran through countless tests to make sure that there was nothing going on with my ears that would be causing my balance issues. After passing all the hearing tests with flying colors he had asked about other symptoms that I had been having. I mentioned the issue with my neck and he immediately knew what it was called (Lhermitte's sign for those still following along) and that I may want to reach out to a Neurologist. This was also the first time someone had mentioned MS being a possibility. Honestly, I was afraid to do that. Hearing MS for the first time made me sick. I wanted to believe that it was just a simple thing that would go away.
Weird Thing Number 4
Then the pain started. Very minimal at first but quickly over the course of maybe a month or two started interfering with daily life. The pain started as random pricks in my chest and arms. Like someone was poking me hard with a pen. That morphed into something that is called the MS Hug. A squeezing sensation around my chest and stomach that can sometimes be unbearable. This would come and go but for most of the time I always had a mild form of this during my daily life. It would feel as though I was always wearing a compression style undershirt. The worst pain came shortly after the onset of the MS Hug. I would get these “zaps” in my feet like I was being electrocuted. Most of the time they were just little nuisances, but once it took me down, at the most embarrassing time. I was shopping at Target, with a bag of dog food in hand, when the sudden jolt in my foot was so painful that it took me to the ground. I dropped the bag of dog food luckily; it didn’t break, and someone had to help me up.
After this I decided to get back in touch with my primary care doctor, who referred me to a Neurologist. Unfortunately, the earliest I could schedule was 4 months out. I reached out to my primary care doctor and he had a close colleague that is a practicing Neurologist that only saw people with MS. He worked his magic and got me an appointment the next week.
Before I even saw her, the orders were to get an MRI or my brain, Cervical Spine, and Thoracic Spine. MRI's are not cheap, so I went to a local MRI chain, Smart Choice MRI (I think they are out of business now) to have it done at a much lower cost.
The Neurology Appointment
I showed up to my appointment on time, and waited in the exam room for what seemed like hours (It wasn't. It was like 10 minutes.) When a knock rapped on the door.
The Neurologist walked in, I struggle to remember her name, and the first thing she said was, "Well Mr. Weber, it looks like you have MS." She was very nice and told me everything I needed to know. In reality, it didn't just look like I had MS, I definitely had MS. She took the time and walked me through the MRI scans and showed me all of the lesions in my brain, and along my spine. To ne honest, most of it was a blur, I don't really remember a lot of what she said.
The next step was to find the best treatment option for me. There is no cure, but there are ways to slow down disability progression. Leaving the office with an armful of treatment pamphlets I headed home. In the car I was almost catatonic. I felt no emotion. I just drove home. As soon as I walked in the door and saw my wife sitting on the couch I broke down and filled her in. We spent the night on the couch crying it out. Trying to get out all the shock of the situation so we can make good decisions about what to do next.
That was in 2019, I was diagnosed in September, so It's now been 6 years. The good news, I know what it is and what to expect. The bad news, there is a lot to expect.
The Relief and the Reality of Finally Knowing
Oddly enough, hearing you have MS can feel like both a gut punch and a weight off your shoulders. There’s relief in finally having a name for what’s been happening to your body, but there’s also fear and sadness in realizing this is something you’ll live with long-term. That’s okay. It’s normal to feel all of it — relief, anger, confusion, even acceptance — sometimes all in the same day.
Then comes another hard truth: realizing you’ll probably lose the ability to do some of the things you used to. For me, that was running. I used to love it — 5Ks, half marathons, even a full marathon once. Within two years of being diagnosed, the RunDisney part of my life was gone. Now, I can run maybe twenty feet before my legs give out. It’s tough to accept that something that once felt so natural is suddenly out of reach.
But here’s the thing — losing one ability doesn’t mean you’ve lost your worth or purpose. It just means life looks different now. The key is learning to adapt, to find new ways to challenge yourself and feel fulfilled. Some days that’s easier said than done, but it’s part of making peace with this new version of yourself. Now, I am a spectator. I go cheer on my wife while she runs. I still have a purpose, it's just a little different now.
The Mental Loneliness of MS
MS is rare. Only about a million people in the U.S. are living with it. That means most people around you probably don’t truly understand what you’re going through. You can try to explain the fatigue, the brain fog, or why your leg suddenly won’t cooperate, but unless someone has lived it, they can’t really grasp what it’s like.
That kind of disconnect can make you feel mentally isolated, even when you’re surrounded by people who care. It’s not that they don’t want to understand — it’s that they can’t. And that’s one of the hardest parts. Finding others who share your experience, whether through online communities or local MS support groups, can make a huge difference. Talking to someone who gets it can remind you that you’re not alone, even on the bad days.
And for the love of god, don't tell someone with MS "but you look so healthy'... Seriously. Just don't.
Doing Real Research (and Ignoring the Noise)
Once the dust settles, you’ll probably do what we all do — turn to the internet. And that’s where things can get messy. There’s a lot of misinformation out there. You’ll see posts about miracle diets, vitamin “cures,” or “detox” plans that claim to reverse MS. Spoiler: they don’t. Eating only lettuce (Yes. That is a real thing I saw.) or cutting out all carbs won’t fix your immune system.
Instead, focus on credible sources like:
Peer-reviewed journals and legitimate MS communities where experiences are shared responsibly.
Learning about your condition from trusted sources gives you control and confidence — and that’s powerful.
Finding Support and Resources
You’re not alone. There are organizations that can help with medical bills, mobility aids, medication costs, and mental health support. The NMSS offers programs for financial assistance and connects you to local chapters where you can talk to others who understand what you’re going through. Online communities, like the MS subreddit or Facebook groups run by reputable foundations, can also be helpful. Just remember to filter what you read through common sense and credible science.
What Happens Next
Take a breath. You don’t have to figure everything out right away. Managing MS is about learning your limits, listening to your body, and working with your care team to find the right treatment plan for you. It’s a lot, but it’s not the end. You’re about to learn more about strength, adaptability, and patience than you ever thought possible.
MS is hard, but it doesn't have to be the end. Science and medicine have advanced so much in the last thirty years that getting an MS diagnosis now, is not the same as it would have ben back in the 80's. For me, I'm on a good treatment plan, I've got a good medical team to help me as I go, and a good support structure at home to help me through things.
Final Thoughts
There’s no roadmap for life with MS, but knowledge really is power. The more you understand your body and your condition, the more you’ll realize you’re capable of living fully, even with MS. Block out the noise, lean on real research, and take it one day at a time.
You'll be OK. I promise.
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