Last week Sherri and I met with my neurologist to review the findings of blood and cerebral-spinal fluid lab analyses. I received a diagnosis of Relapsing-Remitting Multiple Sclerosis. If you ever watched The West Wing, you might recall this was the illness President Jeb Bartlett had and tried to keep secret.
Well, I’m not planning to run for higher office, so am free to share the news in this blog post.
(Side note: I almost titled this post Let Koehler be Koehler. Only West Wing geeks will get this.)
First, a request: We do not wish to receive treatment or management advice for MS, including anything related to diet or lifestyle. Portland is a center of medical excellence. We have many care practitioners skilled at supporting patients with MS, and I am confident in my care team. Later on in this post I’ll share ways you can help out if you would like.
While MS is not directly hereditary, having a first-degree genetic relative with MS does increase the incidence of being diagnosed with it. To our knowledge, I do not have any close genetic relatives with MS, but it’s hard to know for sure because there are adoptions on both sides of my family. We’ve done our best to notify genetic family members with whom I’m in contact. But if you’re reading this and weren’t one of the folks we contacted and you want to get in touch, please feel free to do so.
The only other advice I’ll give about MS is this: If you have never checked your Vitamin D levels, consider doing so at your next general check up. Low Vitamin D is correlated with MS, among other health issues, and mine was incredibly low for years. It’s up to a good level now, thankfully. To get it there and to keep it there I take 10k IUs D3 with 500mcg K2 daily and will have to do so for the rest of my life.
There is no cure for MS. Treatment is about managing symptoms and slowing the progression of the disease. How MS manifests is highly personal and variable. Slowing the progression of the disease is about finding a drug that is well tolerated and balances suppressing the immune system enough to slow down the MS without slowing it down too much such that you acquire all the infections.
My neurologist has given her recommendations for disease-modifying (DMT) treatments for me. She’s suggesting a couple different kinds of oral drugs, which are in the middle of the scale in terms of efficacy vs. safety (those two things being inversely proportional). Her reasoning on the middle option for me is a function of my age (on the older side for onset of MS), that I have spinal lesions (those showing up first tend to make for more quickly progressing disease), but also that my symptoms have stabilized. e.g. I’m not currently in an active flare-up. We’ve started to research those and will decide soon which to try. Starting DMTs early is correlated with better outcomes so we don’t plan to delay.
I’m also starting a medication to help with my most persistent symptom, which is muscle stiffness in my legs and torso. I’m hoping this will make mobility easier and leave me less exhausted in the evenings.
The journey here
The journey to this diagnosis started at the beginning of 2021. Just after the Capital Riot, I experienced numbness and tingling in my right arm and torso. My last two fingers had very strange sensation, particularly when it came to temperature. They didn’t register cold at all and anything remotely warm (like drinkable tea) felt burning, electrical hot. We thought maybe I had pinched a nerve. This resolved in about a week, ten days. Then, a few weeks later, over President’s day weekend, when we had an all-day power outage, I took a stumble getting up from lighting the gas fireplace. Shortly after that I noticed altered sensation from my belly button down through both legs, with the worst of it being in my feet. Most noticeable was a feeling of numbness, like when a limb has fallen half asleep. In the evenings it would be worse, with it sometimes feeling like my feet and lower legs were swollen when they clearly weren’t. I’d get occasional zings of sharp, pokey pain, or patches that felt like they were on fire. I also noticed some loss of sensation in my groin and around my waist, though I could still go to the bathroom okay. Another symptom that I’d been experiencing for the several months now seemed possibly relevant: muscle stiffness in my legs and torso.
When the numbness didn’t subside after a couple of weeks, we made an appointment when my primary care doctor. She ran some blood tests. When those didn’t show anything obvious (like B12 deficiency), she referred me to a neurologist. During our first appointment, the neurologist did testing on the nerves in my legs to rule out local neuropathy. Everything with the nerves in my legs looked fine.
(If you’ve never had this done, it’s fascinating and kind of a trip. In one portion they put electrodes on you in various areas and run current through your nerves and measure the potentials to see if the signals are being conducted properly. In another, they stick acupuncture-like needs in your muscles, hooked up to a speaker. They wiggle the needle around, the most painful part of the testing, in my experience, until it makes contact with the nerve and then YOU CAN ACTUALLY HEAR the signals conducted.)
Next step after the local nerve testing checked out was to rule out central nervous system involvement via MRI. I had one session where we did MRIs of my brain, cervical, and thoracic spine, with and without contrast. Contrast helps the radiologist and neurologist identify the relative age of any pathologies.
My MRI showed lesions on my spine in the area of T8/T9, which correlates with the location in my body where I’d been noticing the majority of my symptoms. My neurologist observed that the lesions didn’t look new. This got us thinking back to the odd sensations I’d been noticing here and there going back at least to January 2020. Interestingly, my MRIs didn’t show any significant brain lesions (just once associated with normal aging).
The next step after this was to collect and analyze cerebral-spinal fluid (CSF) via a lumbar puncture (LP), also known as a “spinal tap.” I was nervous about this procedure. For one thing, I would mark the most invasive procedure I’d ever had to date. To collect the spinal fluid, a needle is inserted into the lumbar region of the spine. Those of you who know me, probably recall that I have had an intractable cough since 2009, which never went way following a particularly nasty upper airway infection. Sherri spent several hours trying to arrange for a consult with someone so we could get advice on how to best manage my cough during and after the procedure in order to minimize complications. It turns our our healthcare system, even with the really great private insurance we have now, is just not set up for this.
We opted for a fluoroscope-guided procedure performed at the hospital with partial sedation. The first time we got to talk face-to-face with the radiologist performing the procedure was when I was already prepped and waiting. He, an experienced practitioner, had never had a patient with my kind of cough before. The procedure itself went fine. Unfortunately, an hour or so into the recovery window, I had an episode of coughing. Mild by my standards, but significant for folks without a cough like mine. I had a mild headache, but otherwise seemed fine, so after the required observation time, we went home.
One of the most common complications of an LP is a spinal headache. If the puncture of the dura doesn’t seal properly, you can leak CSF into the surrounding tissue. This alters the pressure of CSF in the brain and spinal column and can cause an extreme headache and nausea. I had both and by 4-5pm that day, I was incapacitated with pain and barely lucid. We went to the ER later that evening. They administered Benadryl and Reglan via IV and I felt better. Enough we thought it made sense to go home. Around 6am the next morning I awoke with a mild headache but then had another coughing session and by 8am or so was incapacitated again. Sherri called the radiologist who performed the LP and arranged to have me admitted that afternoon for a blood patch.
A blood patch is the primary treatment for spinal headache following LP. They take some of your own blood and inject it at the LP site on the spine. The blood forms a clot at seals the CSF leak. Once the leak stops, the spinal headache tends to resolve within a few hours. In my case it did just that, thankfully. The hardest part was continuing to lay still, completely flat on my back, for more than four hours. Once I started to feel better I really wanted to sit up. Plus my hospital bed was positioned such that I could clearly see the room clock mocking me, even without my glasses! Luckily I had good company to help me pass the time. And ensure I didn’t try to sit up.
Anyway, just before my 41st birthday, and within a 48-hour period of time, I: had my first in-hospital procedure, my first ER visit for myself, my first hospital admission, and my first time using a bedpan! I do not recommend this to anyone as a warm-up to their birthday week. Or ever, really.
How you can help
Some sources say that people with MS have slightly less life expectancy than average. Some say it’s about the same as their peers, but of lesser quality. There’s no way to predict how things are going to be for me. We’re just going to have to do the best we can. What I do know is that the support of our community is and will continue to be super important.
Already in this journey we have leaned on family and friends to help us out. We will continue to need your support. Though, due to the unpredictability of MS, a lot of the specifics we won’t know until we arrive at them.
The first thing you can do is just stay in touch. Because of my ADHD and trauma history, this is particularly challenging for me. You are often on my mind even when you don’t hear from me. Reaching out always means a great deal to me, even if I am incapable of responding or reciprocating in a timely fashion. One way we’ve learned to work with this is to route communications and social planing through Sherri. So, if you want some face time with me, or us, talk to Sherri. If you’re having trouble getting a hold of me, email Sherri (sherri at koehlerfamily.us).
(I’m not sure if the contact forms on any of my websites are working as expected right now, so please use existing contact info for us, or get in touch via email[at]koehlerfamily.us.)
If you’re local to Portland, I’d love to get together (in small groups) as Covid and my energy levels allow. And I’m sure we’re going to need help with things here and there. Running errands, taking care of things around the house, etc. We will communicate those requests as needed.
I think traveling is going to be harder on me from here on out and happen with much less frequency than it once did. So if you’re not local, let’s find ways to connect remotely.
We don’t have any specific financial needs at this time, but if that changes, we promise we will let folks know. My job with Cisco is going well, I continue to love what I do, and my team is extraordinarily supportive. I am able to work just fine right now and hopefully for a long time to come.
Gift cards have been suggested as one way folks can lend a hand, e.g. by giving us a prepared meal without us having to think about how it affects our budget, and we love this idea. We’re working on a link tree or something similar of gift card type things which would lighten our load. Stay tuned!