Transcript
A (0:01)
I'm john strum, and this is real talk, mississippi. It's March 10th, and we have a lot to talk about. This week is Ms. Awareness Week, and I think the best way to raise awareness about Ms. Isn't just to talk about it. After all, we already do that every week on this podcast. But I find that what makes Ms. Real for most people, what truly raises awareness is meeting someone and learning firsthand about their Ms. Journey. One of the unique aspects of multiple sclerosis is the way that it can impact people so differently. So I'm devoting this episode of the podcast to sharing a couple of quite different stories. First, we'll hear from someone who may already be familiar to some of you, especially if you follow our research conference coverage. Christine Wernerozog is part of the RealTalk Ms. Team. And in this episode, Christine shares the details of living with mostly invisible, but nonetheless very real symptoms of Ms. In a moment, you'll meet Christine wernerozig. It's Ms. Awareness Week, and this year the theme is Unseen Seen Ms. Christine Werner Oza lives with Ms. And she's also a member of the Real Talk Ms. Team. So when I thought about talking with someone who's dealing with the unseen, invisible symptoms of ms, I immediately thought of Christine. Thanks for sitting in the interview chair today.
B (1:47)
Of course, it's good to talk with you again.
A (1:50)
Most people think that when you're sick, you go to the doctor, you get a diagnosis, and you begin treatment. So I think the first invisible aspect of Ms. That a lot of people have to deal with is the amount of time it can take just to get a confirmed diagnosis. So let's start there. When were you diagnosed? How long did it take to get that diagnosis? And what kinds of things did you have to overcome before receiving your diagnosis?
B (2:19)
I was diagnosed in 2012, March 30, 2012 to be exact. So we're coming up on 14 years. I had quite a long and difficult path to diagnosis. I saw a community neurologist for almost five years before I got a diagnosis at shepherd center in Atlanta. And yeah, it was, it was very difficult. I had a lot of maybe what you would call non specific symptoms. And my primary care doctor, who I had seen since I was a very young teenager, suggested I see a neurologist. And so that's when I kind of started on this journey.
A (3:27)
So it's interesting that every symptom you were dealing with at the time, they would all be considered invisible symptoms.
B (3:34)
They were. And, you know, I did go to the neurologist and I I did have imaging and nothing showed on the imaging. I also had migraines as well as the imaging. He ordered blood tests. He also ordered an eeg. If people don't know what that is, it's to test your brain waves to see if you have seizures. And I remember I came back to a follow up appointment and I heard him in the hall talking about some brain waves and seizure activity and someone's not going to be able to drive for six months and epilepsy. And I was like, oh, that doesn't sound good. And he was talking about me. So he came in and said I had a sharp wave in my left temporal lobe. And he thought that, that that was the cause of all my symptoms. And, you know, was there epilepsy in my family? Had I been having seizures? And I was like, no, no. And I was prescribed a large dose of Topamax and I couldn't drive for six months. So that was one of the first diagnoses I received. And then we moved on to nerve conduction studies. And the whole time my MRI images weren't, they were clear. For a number of years, I did a neuropsychological evaluation that showed I was not depressed, I was not anxious, but I did have some mild to moderate cognitive dysfunction and my motor skills were somewhat affected as well. This was really alarming for me because I was a college athlete and I have a master of science and, you know, technical and scientific communications. And I, I didn't understand what, you know, what was going on. But they couldn't still contribute it to a specific diagnosis. At the time, they said it was a neurological disorder, probably the seizures I was having, which I was still like, I'm not having seizures. So I kept seeing them, giving the updates on my symptoms, getting MRIs. And in 2011, at the end of 2011, it was the first time I had a few little spots on my MRI and I had severe left eye pain. I was sent to the neuro ophthalmologist because of the severe eye pain. And she looked into my eyes and she said, you don't, you don't have Ms. You know, look at you, you're young, you're fine, everything's fine. You know, there's no way. And I said, well, what is this eye pain? And she said, it's a swollen eye socket. And I said, well, what is that from? How do you get that? She said, oh, it just happens. And I remember her, literally, she had her hand on my shoulder, like pushing me out the door. So a few months later in March, I still had this horrible eye pain. And the nurse practitioner that I had been seeing all of these years begged me to do another mri. I had gone to that appointment in March ready to tell her that I was done with all the tests, all the MRIs. I was saying to her, whatever this is, it's not killing me. And I feel crazy. Everyone thinks I'm a hypochondriac and I can't do this anymore. And she said, one more mri. So I did it. And the next morning I get a phone call from the nurse practitioner and the neurologist. And they asked if I was somewhere where I could talk and sit down. And they told me that there was a mass, a large mass on my MRI and asked if my family had a history of cancer and that they had an appointment for me with a neurosurgeon in a few days, that they needed me to go. So I was very shocked and very surprised to hear after years of Nothing on my MRIs, now all of a sudden, I have almost a 4 centimeter mass. So I went to the neurosurgeon and he said, not quite sure what this is. It could be a brain tumor or it could be a very large tume factor of Ms. Lesion. Let's wait four weeks or so and see if it changes and decide if we want to do a biopsy. I left there very angry, and I called my nurse practitioner and I told her, no one is going to cut into my head. I have a long history that points to Ms. More than it does a brain tumor, and I want a second opinion with an Ms. Specialist. And she agreed. And wasn't but a week later that I had an appointment with Dr. Ben Thrower at the Shepherd Center. And he walked in and he said, tell me your story.