Thank you for saving my life
How the least likely person helped me in a way that I never imagined and didn't know I needed.
In September 2019 I woke up and my left hand was numb. I thought that I had just slept on it weird. But that wasn't the end of it. Over the course of two weeks my entire body went numb, part by part, limb by limb. My right hand was the last area to go numb. Each day a new finger went numb until, finally, my entire body was numb. I couldn't type, hold my phone, or wear any shoes with heels because my toes were too numb to support me.
I wrote it off as stress, lack of sleep, too much exercise. I made a joke that I was having a really long, slow stroke. Maybe it was a pinched nerve. Maybe it was a circulation thing. Maybe it was... I decided to go to my doctor, just to check and see what might be going on.
My doctor told me that she was leaving at the end of the week to go to another practice. I had known this prior to the visit and had already switched PCPs. I am so grateful that I saw her before she left though. She knows my history and this is truly what led to such a quick diagnosis for me. She did a neurological test and said that I had passed, but she wanted me to get an MRI for further testing. To make sure. Just to check and see. Just in case...
My MRI was scheduled at the beginning of October. It was my first time ever having an MRI, and let me tell you, it's loud. So very very loud. It's like being inside of a fire engine siren. I was not prepared. I also didn't know that I would be laying inside of the tube for longer than 10 minutes. In my head I was going to just go through the tube, in and out, no problem. They also had to give me an IV so that they could inject contrast into my veins. I just about had a full blown panic attack.
Two weeks passed and nobody called me to tell me the results of the MRI. I was still numb, still exhausted, still in a fog. I couldn't focus on anything. I was forgetting things and putting things off and just overall failing at life. I had no energy. I tried to go to the gym, tried to play squash. I felt like I was moving through molasses. My body was not mine anymore.
I had an appointment with my new PCP for my yearly physical on October 18th and my poor new doctor had to break the news to me. My MRI results has been sent to my previous doctor and were in limbo until my new doctor pulled them out of the ether.
"You have multiple sclerosis", she told me
"Fuck." was my reply.
This was and wasn't a shock to me. My father has multiple sclerosis (MS), so in the back of my mind, I knew there was a very high chance that this was the issue I was facing. But I didn't want to believe it.
MS is an autoimmune disease where my immune system attacks my central nervous system, stripping away the protective coating on my nerves. The areas where the coating has been stripped away becomes inflamed and when the inflammation goes away there is scarring called lesions.
My MRI showed that I had four lesions; one on my neck and three on my brain. I knew, I KNEW, that there was something wrong with my neck. I had been so worried that there was a tumor.
My doctor told me that she would try to help me find a neurologist so that I could get a second opinion and start a treatment plan. She warned me that this could take a few months. It was a Friday morning so there wasn't a lot of hope that we would even begin to get the ball rolling until Monday.
I knew that I couldn't wait that long. I didn't want to wait months and feel like this. So I texted someone.
I work for a person who's in the medical field. They know people. My doctor warned me that this type of connection might not do much for me, but that it's worth at least seeing. So I texted, said I needed to see them right away. They said the could meet later in the afternoon, just a few hours from then.
I cried. I called my dad, talked to my mom. And I went to work. My husband was traveling and I didn't want to go home and be alone with... this. So I went to work and cried and talked to my amazing coworkers and then I met the person I work for. I took my MRI results and told them everything. They said okay, we can take care of this, it will be fine. They immediately emailed the director of a nearby hospital. By the end of the day the director had gotten back to us with the name of a neurologist that they wanted me to see. We were able to schedule an appointment for the following week.
I cried. I was so grateful. That morning I had felt hopeless, scared, alone. By the end of the day I had a plan, a team, and people who were there for me. I had hugs and reassurance and some hope.
But this, this was not the end of the generosity that this person that I work for showed me. Their kindness did not stop there. The following week when I let them know that I was going to see the neurologist on Tuesday, that person, they offered to take me to the neurologist.
I was so deeply touched by this. My husband was traveling, my family was in a different state, and I was essentially alone. I was fine to go by myself, but not having to go alone moved me in such a way... that I can't even explain. I hadn't been scared to go alone, I've been to countless doctor appointments alone, but this was so different.
So this person took me to the neurologist. And due to the area of medicine that this person works in and is knowledgable of, I felt confident that they would advocate for me and that I would be listened to and get the best care possible. And I did. Not only did I get a team and a care plan, I was able to start treatment right away. Treatment to halt the progression, to stop the inflammation, and to get me back on my feet. I don't now what waiting two months would have looked like for me, but I do know that if I hadn't gotten the help and treatment that I needed so quickly that I wouldn't be where I am today.
This person did not need to do all of this for me. They could have done one thing, they could have just given me the name of the hospital and had me contact the neurologist myself. They surely didn't have to take me to the doctor and then for them to demand that I start treatment right away... I will forever be grateful for this unconditional generosity. My life has been forever changed by this person.