The following is a personal story from Kris, a member of MyMSTeam. With her permission, we’ve shared the story she shared with thousands of MS-ers on MyMSTeam.
Possibly a Possibility
I guess I knew it was a possibility in the back of my mind, but I still didn’t expect the doctor to take less than two minutes to look at my MRI, listen to “my story” of the past four years, and then diagnose me with Relapsing-Remitting MS (RRMS).
I went to that appointment with no expectations of an answer, and just like that, I got one.
Every appointment I went to for the past four years I went with a glimmer of hope that I might walk out of there with some kind of answer, or “fix.” But it was usually the same routine. The neuro taking notes of symptoms, perhaps ordering a test, but mostly watchful waiting. Commentary such as, “This is definitely unique.” Or, “It’s just a potpourri of symptoms.”
It all started when…
About four years prior, I started waking up feeling like a truck hit me dead on. I felt tingly in my brain. I know it sounds weird, but that’s what I felt. I also felt a small tingle in the left corner of my upper lip. I went to a neurologist in the area, and we talked about migraines, which I admittedly had sometimes. He ordered an EEG and an MRI. The MRI, normal. The EEG, abnormal. Diagnosis: probable seizure disorder and atypical migraines.
Well, ok then. An answer, and maybe a surprising one, but not so bad. I started taking Topomax and had regular visits to the neuro. Oh, and I couldn’t drive for six months. That one kind of came out of nowhere.
This was an interesting time for me. I was not feeling like myself. Could I be having seizures in my sleep? Or maybe while I was awake and just not knowing it? The questions and anxiety swirled in my mind constantly. I felt like I was crazy. Every tingle, and every little twitch…what was that? My pinky just jumped. Did that just happen? Did I imagine it? Maybe I should go back for another visit. Let’s up the Topomax. Don’t drive for an additional three months.
My husband at the time was not thrilled driving me an hour to work, then driving an hour to work himself, then driving an hour to get me, then driving an hour home. I started to fear my husband, my friends, and family viewed me as a hypochondriac. I tried to ignore everything and be positive, but I still felt like something wasn’t right. Another visit. The neuro suggested Topomax can make you feel tingly and can cause numbness, and can cause you not to find your words…but he noted it in my chart.
Sigh. Ok. So it’s the medication. My mom said she thought that all along. The good news is I am starting to lose weight because I am not hungry. Bad news is, my fingers are tingly, and so is my head and lips. And why am I so tired? Oh yeah, Topomax causes drowsiness, too.
I started having problems concentrating and remembering conversations that took place. When I went to the neuro and told him about this, he asked if I was depressed because of my divorce and ordered a neuropsych evaluation and wrote me a prescription for an antidepressant.
Well, I don’t know. Am I depressed? I never considered it. Is all of this from depression? Or anxiety? Anxiety can cause numbness and tingly feelings. Depression can cause fatigue. Oh no. What if it’s all in my mind? I will look so stupid to my family and friends who have been following this neurological mystery. Insecurity drops on me like a piano from a second story window like in one of those cartoons I used to watch as a kid.
I get the evaluation. These are some of the hardest tests I have taken, and I have a Master of Science degree (so you can see why I was concerned about my abilities in the finding words and memory areas…that was not normal for me).
I go back to get the results a couple of weeks later. The doctor tells me I am not depressed. I have mild cognitive disorder caused by some type of neurological disorder. Even my motor skills are off. Considering I was a college athlete, this is quite upsetting news for me. He says probably damage from the seizure disorder. Talks about the lobes of the brain that are affected…but all I hear is that I am NOT depressed. It’s NOT an emotional manifestation. I AM NOT CRAZY.
So, doc, what do we do with that? More testing, of course! We do an SSEP. We do a spinal tap. We do another MRI. SSEP, abnormal. Spinal tap, normal. MRI, normal.
Enough is enough
After that, I stay away from the neuro for about 9 months. I had enough. I figured, whatever it was, I wasn’t dying, and I was able to cope and work and go out…mostly. Even my parents said they were tired of the doctors and this “wild goose chase” of MS, which they were convinced I clearly didn’t have. My dad said, “Every time something happens, they just go back to MS because they don’t know what else to say.”
It wasn’t until I started seriously dating someone that I had to come clean about the times I didn’t feel “right.” I could hide it well enough from my parents and my sister; I lived by myself at this point. My boyfriend called it “crashing.” I would get so tired I couldn’t move off of the couch into the bedroom. Sometimes I would feel tingly in my left foot. I started getting foot cramps and leg cramps in my left leg. I started feeling sick in the shower and had to rush out to get cooled off.
I went back to the neuro. We lowered the dosage of the Topomax (“But what if I gain the weight back?” the little scared voice in my head cries). She made a note of symptoms in my chart. We did some blood tests for other diseases such as Lupus, Lyme, Rheumatoid Arthritis. Everything came back normal.
I for an eye
When we got engaged in October of 2010, I began to have this horrible pain behind my eye. Nothing in my arsenal of migraine meds could help it. I went to the eye doctor and everything was ok, as in no Optic Neuritis. I had a neuro appointment in December right before our wedding, so I waited until then to bring the next round of symptoms. The neuro ordered another MRI and she gave me an oral steroid pack to take on my trip. Oh, and she scolded me for not coming in sooner and waiting until two days before my trip. Oops.
Testing, testing, 1, 2, 3…
When I got back from my wedding moon, I had several messages from the neuro. My MRI showed two little spots for the first time in four years. They want more testing. SSEP, EVP, and maybe another spinal tap. I said no to the spinal tap. Been there, done that, with a blood patch, too. So, no thanks. But I did the easy tests. EVP normal, SSEP abnormal in the left tibial nerve again, but not enough for a diagnosis.
In March, I was feeling pretty bad. The eye pain was there still. I was fatigued. The tingly stuff was worse in my leg, my foot, my fingers, all on my left side. She wanted another MRI. I said, “Well it’s only been three months. Why don’t we wait until June when it will be six months?” She said,”No, let’s do it now.”
It’s not a tumor
I got a call at 8 AM from the doctor a few days later (you know it’s bad when it’s early and it’s the doctor, not the nurse). They found something on the MRI. A mass, she called it. A what? She explained they didn’t know what it was, and they wanted to send me to a neurosurgeon for an opinion. They asked me if I ever had cancer before. Seriously? Cancer? Well, I knew this didn’t sound good.
So away my husband and I went to the neurosurgeon a couple of days later. And guess what? He didn’t know what it was, either! “No one wants to stick their neck out and diagnose this.” So why exactly did we come here again? He said maybe a tumor, or an MS lesion.
Those are my two options? A brain tumor or MS? I looked at my new husband of four months. He waited 16 years to remarry, and this is what he gets. Curtain number one: Bride with brain tumor. Curtain number two: Bride with MS. Not a shiny new car. Not a trip to Hawaii. Not the cash option. Not happily ever after. I tried not to cry. The tears were there. I held them for him.
We left because the surgeon said to repeat the MRI in six weeks to see if the unidentified mass in my brain grows, then we might know more about what to do; as in cut my head open for a biopsy. Awesome.
I am not a doctor, but I did sleep at a Holiday Inn Express last night…
I went home and did a lot of thinking. No one was cutting into my head. I had too long of a history of weird stuff going on that to me, pointed more to MS than to cancer. Now, I know I am not a doctor, but I do know my body better than anyone else.
The next day I called the neuro to tell her about the appointment. Before I could tell her what I wanted, she said, “I am calling my colleague at the Shepherd Center. I am going to get you an appointment there and send your records. Get all of your MRI CDs today so you can bring them with you.”
And just like that, I had an appointment a few days later at the BEST place I could be. The MS Institute at the Shepherd Center in Atlanta, GA. Within minutes, the doctor came in, introduced himself, and said, “Tell me your story.”