The Diagnosis is in…
It all started in January 2012, and since then I have documented a laundry list of symptoms, doctor visits, lab tests and many other parts of my journey toward a diagnosis. I finally have one. However, a lot has happened since I last wrote, so please bear with me as I take you through another leg of my journey…
Starting at my ophthalmologist in the southwest suburbs and ending up at Northwestern Memorial Hospital, I had quite a few lab tests: many MRIs, a PET scan, two spinal taps, a lung biopsy and countless blood draws.
My scans, according to my neurologist at Northwestern, looked similar to scans of patients who had neurosarcoidosis, multiple sclerosis (MS) and even lymphoma. With every new MRI, new lesions formed in my brain and lungs, and on my spine. The old lesions disappeared. They were playing “Hide and Seek.”
My blood work was also wonky. My white cell count was low. So, could that be lymphoma? Well, the lung biopsy showed no cancer (but couldn’t exclude it). My vitamin D was low. So, could that be MS? The spinal taps, which are done to try and diagnose MS, were negative. My spinal fluid showed no signs of the disease.
Round and round we went, test after test (hence, the need for a second spinal tap … which was, again, negative), and I couldn’t get a definitive diagnosis. To that end, my neurologist started discussing various treatment options in the hopes of preventing more lesions from forming.
While I had been on prednisone (steroids) for my symptoms, that wasn’t going to help my lesions. Other options included chemotherapy and a variety of MS medications from which to choose. However, without a diagnosis, I didn’t want to put my body through any of the side effects that come with those treatment options. I wanted a second opinion.
So, off to the University of Chicago I went in the fall of 2014. Had the usual lab tests, had the same results, had the same non-diagnosis: “You’re very difficult,” my new neurologist said. “But, I’m going to figure you out.” So, even with no diagnosis, I felt confident we’d find something … some day.
Fast forward to August 2015, or as I call it, “Attack of the Symptoms 2015.” Nearly everything my body has endured the last two months has been a new experience.
At one point, I had a hot sensation on the left side of my body. It wasn’t hot to the touch, but I couldn’t feel anything cold against my skin. I first noticed this when I went to the bathroom (and I don’t care if you think this is TMI). I sat on the toilet and didn’t feel the cold toilet seat on my left side.
I then decided to test this against the shower door. I opened it and pressed my left hip against what should be the cold metal of the door frame. Nothing. It felt warm, as if it had been toasting in the oven. I took an ice cube and rubbed it against my leg. Not even a flinch, because it didn’t feel cold. That sensation only lasted a few days, but I knew I had to see my neurologist.
I couldn’t get an appointment until November because, well, the guy’s in high demand. However, once I got home from work, that hot sensation suddenly permeated the right side of my body and it was intense. I called my doctor that night and left a message with his answering service. The next day (a Tuesday), I received a call that my appointment had been moved up to the following Monday.
Long story short, my symptoms did get worse and my neurologist ordered more lab tests: blood work, a brain MRI and a spine MRI. I thought I had a spine MRI before. I was wrong. My previous spine MRIs only scanned my upper spine. This MRI I needed was to scan my full spine, and it was going to take a bit longer to do. I wasn’t prepared for that, so I only took one sedative to calm my claustrophobic nerves. Needless to say, it wore off and I started shaking involuntarily while inside the machine. I needed to be strapped to the table to keep my body from shaking. No biggie … I just wanted to get the test over with. And I did … several hours later, after we needed redo some of the scans.
I was told the results would be ready in 48 to 72 hours. My neurologist said he would try to call me that Friday with the results.
In a matter of days, my symptoms became rather debilitating. This is what has been going on the last few weeks…
- The left side of my body feels as though it is in a vice … a tight grip. This hinders my mobility tremendously. I can’t take but more than a few steps without my balance being an issue. This means walking 20 blocks a day to get to and from work is out of the question, and getting up and down more than five steps is incredibly difficult without help.
- I have a tingly, numbing, “pins and needles” sensation from my right hand up to my elbow. This makes it hard to grip most things: a glass, my car steering wheel, the TV remote. Thankfully, I write with my left hand … so I can still pay some bills. Yes, I still write checks.
- I have an intense burning sensation shooting through the left side of my chest. This sensation began there and had spread to my neck. However, my neck no longer hurts. At least there’s that. But the pain that remains makes it very hard to sleep. I get about four to five hours a night, if I’m lucky.
Luckily, I am able to work from home as I deal with these symptoms. I am forever grateful for this, and I’ll never take it for granted.
Now, on to the diagnosis. The Friday I was to hear from my doctor (September 11), he never called. I waited all day and didn’t hear anything. Frustrated, I wanted to get out of my house. My boyfriend was away for the weekend. My friends had no plans. My family was headed to the White Sox game. I decided to look at tickets for the game and saw that the rest of the row my mom and sister sit in was empty (no shock). So, I bought a ticket and we went to the game.
After my grandmother passed away years ago, my mom had tucked her cane away in one of our closets. Remembering that, my mom suggested I use it to get around at the game. I never used a cane before. It was helpful, but also an odd thing to use. I’m definitely NOT used to it. We entered through the handicap entrance, and I was ready to enjoy a relaxing night outside with my family.
Just as I started eating a sandwich my mom so graciously brought to me, the phone rang. I saw the area code and I knew … it was my doctor. I half chucked my food at my sister and hobbled up the steps so I could better hear him. Thankfully, the seats were in the last row, so it was just two steps.
Our conversation was brief, we scheduled an appointment for the next week and I headed back to my family to tell them the news: I have MS. Based on the severity of my symptoms and the look of my scans, he was confident in diagnosing me with multiple sclerosis.
For now, I’ll simply deal with this relapse period as best I can, patiently wait to start my treatment and hope to enter a remission period soon. In my next post, I will tell you all about my journey to treatment, which has been anything but a smooth ride. However, I’m determined to keep a positive attitude through it all. I know that someone out there has it worse than I do, and I have no right to be sad or to complain when I should be loving life and living for a good time.
CARRIE, IVE BEEN THINKING ABOUT YOU SINCE YOU DONT POST ON FACEBOOK AS MUCH AS YOU USE TO. I THOUGHT IT WAS MAYBE BECAUSE YOU DIDNT LIKE YOUR NEW JOB. SORRY TO HEAR ABOUT ALL YOUR NEW PROBLEMS. TELL YOUR MOM, HI FOR ME. TAKE CARE OF YOURSELF. EMAIL IF YOU LIKE, WOULD LIKE TO HEAR FROM YOU, GAIL
Thanks, Gail! I love my new job, and I can’t wait to get back into the office once I start feeling better. 🙂
Carrie, I’m sorry to hear that your symptoms have gotten worse. It must be somewhat of a relief to finally know your diagnosis is because now you can fight with knowledge. Please keep us all updated on your journey to treatment. Sending you lots of positive vibes and well wishes. Please take care.
Love you dearly,i always wonder why not fair things or illness happen to the most beautiful person inside and out,with caring heart and just all around great person. Carrie i know your strong women and fighter. I will pray for you,please call us or just need a friend talk to ok. We love you the whole family pulling for you xo.
i will always be there for you. Keep writing and sharing with others.
Hi Carrie, You are such an amazing woman! I admire your courage. Your positive attitude is awesome. I will be praying for you to be able to contine with such a great attitude and for physical and mental strength, and for insight and great wisdom in your treatment decisions. I will be following your journey and reading your blog. And of course I will be praying for your family too as they try to come along side of you and every way. All my love your cousin, Laura
I will buy you a little red radio flyer wagon (with the guard rails so you don’t fall out when we hit those big cracks in the sidewalk) and take you anywhere you want to go!!! Love ya, Bunch!!!
Carrie, we are really sorry to hear this. Your positive attitude is inspiring.
We have put you on a Healing/ Wholing network that we are involved in. People all over the planet direct universal energy to the people on this site. We will continue to hold you in our hearts. Mary and Will