So, Ive never written about this in any sort of detail before, and honestly, I haven’t really discussed it with many people. But I’m trying to be healthier, more active, and a better role model for my daughter, so this part of my life kind of needs to get out in the open, since it has an impact on all of that.
There are many things that a 27 year old doesn’t want to hear from their doctor. “It’s gangrenous.” “That’s a whole lot of blood” “You have a tumor” “You have MS”
Those last two? The tumor thing and the MS thing? I was told both in March 2010. Happy freakin’ birthday!!
So, let me start from the beginning…
In February I started having trouble breathing. It happened mostly at night, but occurred throughout the day where I felt like I couldn’t catch my breath or that I wasn’t taking in enough oxygen when I would inhale. I saw a doctor twice, who gave me breathing treatments and steroids that did nothing. He decided that I was just an overly emotional female, and clearly it was “just anxiety” gave me Ativan (which I never took because I knew the guy was wrong, and who the hell wants to take Ativan?? I need to BREATH not be unconscious for hours) I cried, every night. I felt like doctors had failed me and nobody would listen. Then things got worse.
I woke up one morning with pins and needles in my feet. I thought I must have slept wrong and that it would go away after walking around for a bit. It didn’t. In fact, it got progressively worse as the day went on. Within 3 days my feet, my legs, my torso, my arms and my hands were numb and tingling. The only parts of my body that weren’t numb, were my neck and my face. I couldn’t type on the computer at work anymore because I couldn’t feel the keyboard. I thought it HAD to be a pinched nerve in my neck or something. So I went to have a massage. I kept telling the therapist to work deeper, and use more pressure. I ended up with bruises all over my back (my fault, not his) because he was working incredibly deep, but I couldn’t feel it. There was no change. I saw two massage therapists and a cranial-sacral therapist in 3 days. No change. So I went to my doctor.
Again, I wasn’t listened to, and my symptoms were blown off and I was told that it was Raynaud’s. A syndrome which I DO have, but the symptoms I presented with were very, VERY different. Raynaud’s causes my feet to turn purple/blue when they are COLD. My feet (and ya know, the rest of my body) was numb ALL THE TIME and it was worse when I was hot.
I made another appointment with a different doctor in the practice.
I told him my symptoms and his immediate response was “When a woman of your age presents with these symptoms, we automatically think MS.” He said ti was a pretty clear diagnosis, and never should have been missed. He arranged for me to meet with a Neurologist that he knew, a few days later.
I went and saw the neurologist, who spent over an hour asking me questions, poking and prodding, and taking notes. In the end she sent me away, and said she’d call me in a few days.
I got the phone call the moment I arrives back in our driveway. She wanted to call to tell me that she wasn’t sure if it was MS, she wasn’t sure what it was but she was referring me to a Neuro-Oncologist. She needed me to have more tests done to rule out cancer (or rule it in) and that she really couldn’t give me a diagnosis of MS until I had a second “flare” One isn’t enough.
And then I lost it. I told Dave he didn’t have to stay with me. I didn’t want him to be “stuck” with a girl who could be sick or disabled or dead. We had just run our first 5k together (A great idea when your have minimal feeling in your feet and can’t breathe) We were planning our wedding, we were planning our future, and I was being told that I needed to see an oncologist because I might have cancer? Or that maybe I still had MS. And that my future might not be as long as I had expected.
Obviously he didn’t leave. He was amazing and supportive and….perfect. He stayed. Met with a future the held uncertainty for him, he stayed. Because he’s amazing.
So we went to the neuro-oncologsit. I had over ten hours of MRIs. From the base of my spine to my brain. It was scanned, rescanned, scanned with dye, scanned without. I think I was in every MRI machine that Rhode Island Hospital has. I had CT scans and PET scans. I had my vision tested and met with so many different types of neuro specialists. They found a Lesion or a tumor in my spine between my 2nd and 3rd cervical vertebrae. It definitely accounted for the numbness and also for my difficulty breathing, since being that high in the spine would affect my diaphragm. The doctor needed to run more tests, at this point it could still be MS or it could be a tumor.
I had a spinal tap that took over an our, and over 20 “sticks” he hit my vertebrae more times than I could count(apparently I have “Unique anatomy” and he couldn’t get in to the proper space) He wanted to stop, I told him to just try one more time, and finally, he got it. Spinal fluid was all clear. No signs of MS or signs of cancerous cells *phew* right? No. Because the only other thing left to do was biopsy the Mass-lesion-tumor-alien implant and due to the location…INSIDE my spinal cord, that wasn’t an option. Neither was removal.
SO what do you do when nothing can be done?
My doctor took my case to the tumor board at Rhode Island Hospital, where they decided since my symptoms were improving (my numbness was dissipating) and the “mass” looked to be stable (not growing) and my spinal fluid was clear, that we could watch and wait.
(When I find my scans, I’ll post a picture of my little spinal invader, here)
So the plan was to check it in 6 months, and then a year. But my 6 month appointment got canceled, and then rescheduled to the week before our wedding. I wasn’t going to have the MRI and then worry through our wedding about the results so we put it off. And then I went and got pregnant. and I wasn’t about to have a 4 hour MRI during pregnancy. And then I had Avery, and now it’s been way too long. There were other issues involved, like insurance, but I have that now.
So here I am, I don’t have any excuses, I need to go back and make sure everything is still “ok” in there. While I have been relatively symptom free for this whole time, I still have pretty significant numbness in my finger tips. I’ve gotten used to it. The symptoms are worse when I am hot, or my blood is pumping. For example, when I work out, my hands get very numb. My feet and legs also get the “pins and needles” feeling, and I still have a hard time pulling in enough oxygen. I still have LLhermitte’s sign which still catches me off guard every time it happens.
I didn’t write this because I want anyone to worry or feel sorry for me. Is it scary? Yeah, it is. I think about it daily, and every cough, every ache, every-everything that happens with my body makes me think “Oh God, it’s cancer…I know it” I’m not a “victim” of anything. There are people who are much, much worse. But I’m writing this so that I am accountable.
I need to take care of myself. I need to do this for Dave and for Avery. I need to be here and I can’t sit around waiting for something to happen that forces me to get it checked.
So, I will be making an appointment THIS WEEK, and I will get back on track with my health.