It’s been a hellish couple of weeks. I’ve spent half of the last two weeks crying, feeling falling apart horrible, and the other half feeling strong and optimistic, like I can deal with anything I’m handed.
A couple Fridays ago I wasn’t feeling so great. I’d been feeling tired off and on for a while, but this day was different. I was exhausted and nauseated with numbness in my hands, feet and face. I had that run over by a truck feeling like you get when you have the flu. My head was pounding, and I hadn’t slept really well in months.
It kind of felt like a cruel joke the universe was playing on me. For the first time in my life, I was making time for myself, making my own well being a priority. I made sure I had enough time to sleep and exercise everyday- the only problem was I couldn’t sleep, and then I was too tired to exercise. Ha, ha, that’s really funny, Life.
I wonder if it’s some sort of challenge, like my body’s saying, well, let’s see how far you’re willing to take this whole “take care of yourself thing”. Are you willing to go broke? Are you willing to spend all your money on healthcare and healthy food?
So that Friday night, I went to see a doctor at MedHelp. I thought maybe my woes were related to my thyroid since I take medicine for hypothyroidism. He said he would do some blood work to check my vitamin and thyroid levels, since both vitamin deficiencies and low thyroid could cause my symptoms. And then he said, “but if this all comes back normal, I’m concerned you could have MS.”
M, what?!! Of all the things I’ve worried about in my lifetime, MS had never made it onto my list of potential catastrophes I should be prepared for. It had never even crossed my mind.
He said I was in the right age range, and I was female. And that it often starts with fatigue, headaches, body aches, an interruption in sleep patterns, and numbness in your extremities.
Usually my initial response when something bad happens is to keep calm, focus, and be extremely practical. It’s almost like an out of body experience, where I become really objective, observing the situation from a far. The panic doesn’t set in until later, so I immediately started preparing myself for what all this could mean.
My thoughts the week after that appointment went something like this: “Ok, so I have MS- I’m going to be the poster child for how healthy you can be with MS.” “I definitely don’t have MS- I’m sure this is just a virus that will pass.” “I think this is all in my head.” “My symptoms are the exact MS symptoms, I’m sure I have the progressive kind, and I’ll be in a wheelchair by next week.” “MS, I probably don’t have it, but if I do, hey, it’s no big deal.” “MS, it’s a death sentence- I’m losing everything!!!!!” (while sobbing uncontrollably)
A week went by and the doctor called the following Friday to give me the results of my blood work. My thyroid was a little low, and I was deficient in Vitamin D- but neither one of those seemed likely to be causing my symptoms. The doctor again said he was worried and wanted me to see a neurologist. My sweet friend, Ana, works in a neurologist’s office so she gave me some tips on how to best navigate the system, and I made an appointment for the following week.
But a few hours later, I started feeling really dizzy and my limbs felt so heavy that it was hard to walk. I panicked and, hysterical, I called my mom to tell her I was going to the emergency room. I work in the ER all the time, but it was my first time there as a patient. I stumbled in and couldn’t bring myself to tell the ER nurse what was wrong- he saw the tears in my eyes and asked if I needed to be seen. I nodded while I clumsily filled out the paperwork. My sister works at the hospital where I was so she came to see me, and something about seeing a familiar face made me cry even harder. Within an hour, my mom and Chris were there, too. I’ve always known that I have a wonderful family and support system, but this experience has magnified that exponentially. I’m SO incredibly fortunate.
They did a CT scan and more blood work in the ER, which all came back negative. The doc said that I didn’t have a brain tumor, and she was able to rule out several other things, such as an infection, lupus, etc. But she said there was no test that she could do in the Emergency Room to rule out MS.
She looked at me with a sad face and said that my symptoms sounded like MS to her, and she just hoped that the neurologist could come up with another explanation that she wasn’t thinking of. She said, “All I can do is give you a prescription to help you sleep and calm your nerves, so you don’t panic this week while you’re waiting to see the neurologist.” “I know I would be panicking,” she said. That last part wasn’t very helpful.
So I went home more convinced than ever that I have MS.
It was a long week of ups and downs while I waited for my appointment yesterday. When the neurologist saw me, it was comforting that he didn’t automatically think it was MS. He said we needed to cast a wide net to see what we could find. I’m getting an MRI next week, and he said sometimes even migraines can cause these symptoms. But I don’t feel like I have migraines. I feel like I have the flu mixed with insomnia, weakness, numbness and dizziness. I feel weak whenever I stand up, and sometimes it feels hard to catch my breath. Sometimes I can’t hold it together and cry when someone casually asks how I’m doing and other times I feel pretty normal- it comes and goes.
I still have no idea if I actually have MS or something else, but I’m now an expert on everything related to it. I can tell you which supplements you should be on and what things you should avoid. There are two different MS diets, one of which I’m already following! One physician with Progressive MS was able to reverse her symptoms with a certain diet. Here’s a link to the Ted talk she gave regarding the changes she made in her diet to go from being wheel chair bound to riding her bike to work. She’s recently written a book called Minding Your Mitochondria. I’ve cut out gluten and alcohol(mostly) and am eating 9 cups of different organic fruits and vegetables a day and 4 ounces of grass fed beef or salmon. I’ve started taking Vitamin D, Omega 3 fatty acids and Vitamin B supplements. In less than a week, I’ve already spent $350 on food!
I don’t feel sorry for myself because life is still pretty great. I’m often surprised that even more horrible things haven’t already happened to me, and I’m really glad that I don’t have a brain tumor.
I’m mostly just worried about how it will affect my energy for the things that I have loved in the past. I’m worried about not being able to go on backpacking trips or about having to take medicines that could hurt my body in other ways. And I’m sad for all the ways that I’ve abused my body in the past that could’ve contributed to whatever this is.
Just like always, there are so many unknowns. And even after the MRI, regardless of what they find or don’t, there will be many more unknowns. Everyone with MS has different symptoms with different degrees of severity. And if they don’t find anything, then I still have to try and figure out why I’m having all these problems. Or wonder if it is all in my head ☺