In which I tell the story of my initial symptoms, my diagnosis, and applying for the clinical trial.
This is for those of you who haven’t heard this part of the story and are interested. I know I can be wordy, so feel free to skim or skip. Also, I don’t plan for any of the other posts to be nearly this long. 🙂
Back in the late spring/early summer of this year, I had some numbness in my right hand. I attributed this to some kind of neck problem, but when I would move my head around to see if I could stretch it out, I noticed that when my neck was in a certain position, my right foot would feel like it was asleep. Mom thought that was weird, and maybe I should see someone about it, but I just figured it was a weird neck thing, and anyway it went away on its own after about a week I think. (I didn’t document any of this because it didn’t seem significant at the time, that’s the same reason why I don’t know exactly when it happened.)
Fast forward several months, to September 13th. My symptoms returned, except this time my whole right side was numb below my neck. My fingers were the worst, but I was a little numb all over. *That* was a little freaky. But I still thought I probably did something to my neck, you know, maybe slept on it wrong or something. But, my mom was kind of freaking out about it, 😉 (rightly, as it turned out), so I got serious about it and got on the internet. NOT to scare myself, 🙂 but to find some neck exercises to make it better, and show Mom that it was nothing serious.
But the more I read about pinched nerves in the neck, and as I tried the exercises, I started to think that wasn’t it.
So, I Googled my symptoms. But nothing that I read sounded right.
I wasn’t too worried that night (it was wednesday by this point) but the next morning, Thursday, when I woke up, I decided to do a little more reading. I had seen MS pop up in the search results, but I had ruled it out (not based on anything, just an assumption). But then I thought “I should just read about it just in case. Besides, I’m a nurse, and I should really know what early symptoms of MS are anyway.” So, I clicked the link. And as I read I started crying. (Those of you who think I took this really calmly didn’t hear about it until at least a month later.) The first 2 symptoms that are listed on that website are:
- Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time, or your legs and trunk
- Electric-shock sensations that occur with certain neck movements, especially bending the neck forward (Lhermitte sign)
I went to the living room to find my mom, and I couldn’t even articulate because I was crying so much. I was just pointing to my phone screen, and she was confused, and I finally got out something like “I think I have MS”.
She tried to reassure me, but I just cried for a few minutes. I was picturing myself in a wheelchair, or at least walking with a walker in a few years. I was thinking that the game of Ultimate Frisbee I had played with my friends over the summer, might be my last game, things like that.
I had also read that your diagnosis might have to be confirmed with a lumbar puncture (not the case for me) so I was worried about that as well. I really wasn’t sure which one I was worried about more sometimes. 😉
Anyway, when I collected myself sufficiently, I called my doctor’s office. My regular doctor was booked, but I was able to see a new doctor that same afternoon.
When I was making the appt to see the doctor, a nurse wanted to talk to me to make sure I wasn’t having a heart attack or a stroke or something like that, because I was reporting one-sided numbness. She also asked me if I was okay, because it sounded like I was having trouble breathing, but as I explained to her, it was just because I was freaking out about the whole thing.
The primary care doctor was very nice, but unfortunately there wasn’t a lot she could for me, other than some blood tests and a referral to a neurologist.
After my appointment, we picked my dad up from the hospital, where he’d been because of a stroke. So it was a stressful time for all of us.
There’s not much to tell for about a month, except that the numbness diminished, so it was just in my hand and a little bit in my R leg. I had to wait until October 19th to see a neurologist. She referred me for an MRI. I was able to get that much sooner than I’d expected, later that same week (October 22).
I wasn’t sure if I’d get the results by the end of the day friday, or if I’d have to wait until monday, but another neurologist called me about mid-morning on friday to tell me that my MRI looked like I had MS.
So, a bit more crying. 😉 But maybe not as much as you’d think. I had been preparing for that diagnosis since September 17th when I read the article I mentioned earlier. In that way, I was grateful that it took so long to see a neurologist.
In the meantime, I had checked out 2 books from the library: The Wahls Protocol, and The Wahls Protocol: Cooking for Life.
I had first heard of Dr. Wahls over a year earlier at a friend’s birthday party. 😉 My friend’s family contains a lot of people who love to read, and they talk about books. So, her dad mentioned The Wahls Protocol as an interesting book that he had read recently. Being a science nerd, I put it on my list. That was in March 2019. I read the book (technically listened to it) that summer. I thought Dr. Wahls had some great ideas, and that I should probably eat healthier, especially eating all the different types of vegetables that she advocates.
But I did I do it? No! In one ear and out the other.
But in September of *this* year, when I realized I might have MS, I remembered Dr. Wahls (who, by the way, came back from being in a wheelchair, all through the healthy lifestyle that she advocates). In addition to checking out her books from the library, I also looked her up online to make sure she wasn’t a charlatan. 😉 (Didn’t really think she was, but wanted to be sure before I made treatment decisions based on her work.) What I read was reassuring. There’s definitely a wide range of opinions on her work, but basically the message I got was “Just because it worked for her, doesn’t mean it will work for you”. That’s fair. But no one was claiming that she didn’t really have MS and was just faking it or anything like that.
I figured that if she could get OUT of a wheelchair, I could avoid going IN to one.
Plus, I did some more reading on MS. Again, not to scare myself, but to get an idea of what I was facing. That was encouraging also. Many people have very mild cases that progress slowly over decades. Those depressing thoughts I’d had about never playing Ultimate Frisbee with my friends again started to fade.
My neurologist was able to work me in, so I saw her a week later, on October 30th. She confirmed my diagnosis as Relapsing-Remitting Multiple Sclerosis (RRMS). (We think the numbness I had earlier in the year was my first MS episode.)
When I was doing all that research about Dr. Wahls, I had found a clinical trial that her team was conducting. It’s based out of the University of Iowa, but fortunately for me (one of the few blessings of Covid-19) it’s being conducted virtually. I wasn’t able to sign up for it previously, because I needed a documented diagnosis (not just my opinion). 😉
My neurologist was adamant that I needed to start on disease modifying drugs right away. I was hesitant. I had already decided that I wanted to wait at least a few months and give the lifestyle modifications a try. But the doctor was really pressuring me. So, I walked out of her office with a prescription which I explained I might or might not be filling.
My mind had been made up before I went into see her, but she scared me. However, she also said some encouraging things. She said I have “the good MS” (if there is such a thing). 🙂 It sounds like no one understands exactly why, but certain groups of people do better in the long-term, and I’m in most of those groups.
She said I had a better prognosis because:
- I’m a woman
- I’m young
- My symptoms started with numbness and tingling rather than weakness
- Most of the MS is in my brain rather than my spine (that doesn’t sound better but for some reason it seems to be)
So, my mom and I talked about it on the way home, and she agreed that she’d support me NOT going on the medication yet, but that if I have a relapse I’d go on the medication. I was still nervous about the decision.
Shortly after we got home from that appointment, my primary care doctor called to see how I was doing with everything (she is SO sweet). I told her about the debate over the medication, and she was supportive of me taking my time to decide on the best course of action. She also seemed much more open minded regarding alternative therapies than my neurologist.
For both myself and my mom, that was a sign. We’re Christian, and you don’t have to agree with us, but I have often made decisions by looking for an open door.
My next open door was that my local pharmacy called me to say they couldn’t fill my prescription and I’d have to find a different pharmacy because that medication wasn’t available to them. Now, I’m not saying I couldn’t have gotten it, because of course I could have. 🙂 But I was a little embarrassed about having to tell them “Never mind” on the prescription they were filling for me. But before I even got around to it, problem solved!
Finally, when I went back to apply for the clinical trial that day, they were still accepting applicants, and they were looking for newly diagnosed individuals who weren’t on medication. Later, I found out that the study *closed* to new applicants the NEXT day, October 31st, so I was (at least one of) the last to get in.
Also, I want to give credit where credit is due: as resistant as my neurologist was to my plans for alternative therapies, she was the fastest doctor of all the other study patients to send the required paperwork to the study coordinator so I could be enrolled. 🙂
Amanda's Journey with MS 