How I Got Diagnosed with MS

I want to preface this with a hard-to-follow bit of wisdom: if you know something is wrong or different with your body, go to the doctor or the ER, or call your care team and get their opinion.

At the ripe old age of 26, I have more medical trauma than I could ever dream of, and that makes it extremely hard for me to trust myself and my body. There is also the cost aspect of it. Nobody wants to go pay ER prices for nothing. But sometimes you have to.

Again, easier said than done, but those are my two cents for today.

Last week was a busy week for me. I had an allergy appointment to discuss and test for MCAS, and I am still waiting on results. I also had a primary care appointment in Seattle that I did not want to go to. Not for any real reason — it just seemed like a waste of a drive and a waste of time, and like I and my health weren’t worth it, and the care team I already had was fine. All bullshit driven by medical fatigue, of course. But I went, and I am obviously very glad that I did.

Before we get to the drive, the past couple of weeks I had been having some awful vision issues. I was having a hard time focusing, I was seeing double, and I was just struggling in general. Unfortunately, this isn’t uncommon with POTS, but it was different and more severe for me.

Additionally, between me, you, and the whole internet, I had also peed my pants a few times. While this is embarrassing to share, I think honesty is important and helpful. This wasn’t an “I waited too long” situation or an unknown UTI. The need to pee came out of nowhere. One second I was fine, and then it was like I hadn’t peed in days. This issue was also exacerbated by the fact that I don’t move quickly these days. But, again, this is not horribly uncommon for POTS, so I started intentionally emptying my bladder every two to four hours and moved on with my life.

Now back to last Tuesday. My dad and I were driving home from Seattle, and my feet and legs started to feel numb and uncomfortable. I know we are all sick of hearing this at this point, but this is also not at all uncommon with POTS, especially after sitting all day, despite wearing compression socks. So I dismissed it and went on with my life.

Wednesday I woke up and my feet were numb and burning, and I did nothing. Thursday: numb and burning, did nothing. Friday: same thing. Saturday, I woke up and the numbness and burning was spreading up my legs. So I called the UW emergency line to get their opinion. They asked me a bunch of questions, we determined that I had not had a stroke, but we also decided that I needed to go to the ER within the next four hours based on the numbness and the bladder issues I was having.

So I got dressed, went to wake up Adam, and said, “Don’t freak out, but we are going to the ER.” He, being the best and most loving partner ever, didn’t super duper freak out, but he did tear through the house and considered dragging me out the door at least a few times. After we packed a backpack, we headed to the ER.

Once we made it to the ER, it was honestly pretty smooth sailing. It was also pretty quiet. I think we were in the lobby for two hours or so. Adam ran out and got us breakfast, and then we headed back.

Once we made it to a room, I put on the cutest gown in town, and we determined again that I had not had a stroke, but that I did need a full MRI of my spine. So that is what we did, and then, as you do in the ER, we waited.

We got the results back via MyChart before the doctor even made it in, which apparently pisses them off, by the way. From this MRI, we discovered that my spine was covered in nine inactive lesions and two active ones, the active ones being what were causing the numbness and the pants peeing. It was also at this time that we found out that, similar to Forrest Gump, I could have whatever I wanted to eat and that I would be there for a few days. We also found out I would need another brain MRI, despite my September one being “clear” — more on that later.

After the ER doctor explained this, we did get a visit from the on-call neurologist. All in all, he was helpful and pleasant. However, at one point we asked if the MS could explain the seizures and paralysis I had been having, which had been getting worse. He said, “Nope. The only thing that can treat that is a therapist.”

There was no thought or consideration, just that. I have choice words I won’t be sharing in this blog about that.

One positive is that my attending physician on the hospital side of things has quite a few patients with severe POTS who have non-epileptic seizures. This didn’t change any of my MS care, but it was a big moral booster after the therapy comment in the ER.

Around 5 PM, I was admitted and met the best, most wonderful, kindest set of nurses and care team. I currently don’t have words to describe how kind and comforting they were. Literally angels.

Saturday evening consisted of waiting for my brain MRI, which did not happen because we had to wait for the contrast to leave my system. So Adam ran home for some supplies, and we hunkered down for the night.

The MRI was ordered for 12:00 PM and, thankfully, was much shorter than the spine one. I have no issues with the MRI machine — in fact, I find it weirdly relaxing — but fun fact: MS can cause issues swallowing, and fighting to swallow makes it hard to get a clear image of your neck.

Anywho, if my brain MRI came back clear, I would be getting a spinal tap. Much kudos to all the mamas out there, because I was wigged and did not want it.

But the MRI came back with an unknown number of inactive lesions and an active one on my left optic nerve, hence the vision issues. We got this report a while before the doctor officially confirmed the MS diagnosis, so we had plenty of time to read and evaluate it. While going through the report, we discovered something that made both Adam and me see red.

It said that the lesions in my brain were in the same spots they had been in on my MRI from September.

I HAD LESIONS GROWING AND NOBODY TOLD ME, AND NOBODY INCLUDED IT IN THE MRI REPORT.

To add insult to injury, I requested my MRI and took it to an outside neurologist to review, and they couldn’t even be bothered to look at it. We are still trying to figure out what to do with this troubling information.

I was in the hospital for four days, and after we determined it was MS, I had three very hefty rounds of steroids and two B12 shots. They have left me exhausted, but they have improved my symptoms some.

In the hospital daze I was in, I had understood that I would be sent home with full feeling in my feet and feeling much, much better. That was my mistake. The steroids will help kick-start the healing, and now we will see how things end up over the next few months.

I currently have an urgent referral to Kadlec Neurology and to UW Neurology. It is recommended that I am seen within the next month to start disease-modifying treatment.

This week I have an eye appointment, three primary care appointments, and I will be starting physical therapy for both POTS and MS. I will need monthly blood work, and my vitamin D and B12 levels will be monitored very closely, with the promise of more B12 shots in my future.

Well, this is what I know for now. It is a lot of information, with more to come this week. I will continue to keep everyone up to date.

I want to thank everyone again so much for their prayers, well wishes, and support through all of this. It means so, so, so much to Adam and me.