Doctor Shopping
Now in my first post I told y'all about a wonderful doctor who kick-started my diagnosis, my ophthalmologist. My primary care doctor was equally supportive and invested in getting to the bottom of what was going on with my body. She was set on expediting the process of finding a cause, and went to work getting me into whatever neurologist she could ASAP. This is where my diagnosis path hit a bit of a roadblock for awhile...
If I could offer one piece of advice to someone working toward a diagnosis or even someone who has already been diagnosed, it would be find a neurologist you trust, who listens to you, and who you feel comfortable with. Don't be afraid to be your own best advocate; neurologists are the key to all things MS in your life, from symptom management, to disease-modifying treatments should you choose to use one, to just general quality of life. You're going to be stuck with them potentially for the rest of your life, so you might as well like them!
I learned this lesson real quick. When I went to my very first neurology appointment in mid-December, at the recommendation of my primary care doc I brought along a timeline of any and every symptom I had experienced: double vision and leg numbness at Halloween, sudden temperature sensitivity mid-November, torso numbness at Thanksgiving, etc. (HIGHLY recommend doing this - it makes your life and the doctor's easier and keeps you from having to remember everything in a stressful situation.) So I pass this timeline along to my neurologist, who puts it in a folder and has me walk him through all my symptoms without even giving it a glance; that probably should have been my first red flag, but I didn't think much of it. I walk him through what I've experienced, no doubt leaving out details along the way trying to recall two and a half months of symptoms from memory. I had already had a brain MRI at this point at the request of my PCP, so he showed me my MRI and said there were no lesions he could see, but he wanted another one done with contrast. He ran threw the litany of neurology tests that make you feel like a bit of an idiot; if you've already seen a neuro you know what I'm talking about - touch your nose, walk heel to toe, rotate your arms, get poked with a safety pin - it feels like you're just being asked to do weird stuff for the doctor's entertainment honestly 😂 Based on the locations of my numbness, he also ordered MRI's of all three sections of my spine; as someone who gets very claustrophobic in MRI machines, I wasn't all that thrilled about that, but thus is life in the world of MS!
Long story short, I get my MRI's done and go in for my follow-up, with some new symptoms like intense muscle cramping in the same areas as I was experiencing numbness. I explain this development to the doc, and he responds with "You've read your books," with a grin and then moves on to talking about my MRI's. I remember just looking at him wanting to go "huh?" but I ignored it and looked at the MRI's that showed a pair of lesions, one on either side of my thoracic spine. Based on this information and his view that I'd had a single "attack," he said he didn't think it was MS, instead he was labeling it as "idiopathic transverse myelitis" - in English, that's a deterioration of myelin (myelitis) on both sides of the spine (transverse) with an unknown cause (idiopathic), likely a one-time virus. He said that my double vision was being caused by migraines despite experiencing no pain and having a history of migraines that always come with debilitating pain. I wasn't convinced on the migraine front, but hey, he's the neurologist, right? He put me on an anti-anxiety medication to address the migraines and said we'd re-scan in a few months to see if there are new lesions; only then, he said, could he diagnosis MS. On our way out of the appointment, I reiterated the "you've read your books" comment and said to T, "I think he was implying I was making it up?" It didn't sit well with T either, but we weren't sure what to do with it, so we let it slide. I found very quickly that the anti-anxiety meds made me feel horrible, triggering extreme anxiety and anxiousness and disrupting my sleep. When I told the doctor, he seemed annoyed; he said I was probably just anxious about my health but we could try another medication "if I really wanted to." That didn't sit well with me, and after the "you've read your books" comment I realized I really wasn't feeling comfortable with this doctor, I'd just been pushing my discomfort aside in favor of his medical degree.
I just happened to have a physical scheduled with my PCP shortly after, and I explained to her what had been going on and how I wasn't sure I liked the neurologist I'd been seeing; again, being totally unfamiliar with this new world of neurology, I asked her if she thought I should get a second opinion or if it was normal to. Being the wonderful doctor and human she is, she looked me square in the face and said, "If you aren't 100% comfortable, then yes, I absolutely think we should find you another option and get this figured out." She referred me to a new neurologist to whom I took the same timeline I'd given the first; she was amazing. She walked through my timeline with me step by step, asking questions, and taking notes along the way. She ran the basic neurological tests, but also ran some vision tests and asked me questions no one had yet asked me, such as "is your double vision side by side or at a diagonal?" That caught me off guard - I hadn't ever thought about it, but it was a level of detail that showed she obviously wanted every little detail. After reviewing my case she looked at me and said, "You are not having migraines, which I think you already know. So you can go ahead and start weaning off that medication." She also explained that based on my timeline, I had not had one attack like the first neuro said, but that it was fairly clear I'd already had three: 1) double vision, 2) left leg, 3) torso - while the double vision and left leg numbness happened at the same time there was no way one lesion could have caused both based on where lesions would have to be located so that was my separation in space required for a diagnosis. The torso numbness nearly a month later gave the required separation in time, and just like that I technically had fulfilled the criteria for MS. To be as sure as she could however, she wanted another brain MRI but with a more detailed/intense machine as she was pretty confident there was a lesion there, we just weren't seeing it on the MRI with lesser detail. Two weeks later I was back in front of her with a more detailed MRI image that, sure enough, showed 2 lesions exactly where she told me she thought they were. If that doesn't instill confidence, I don't know what does. So let me just say, if you happen to be in Colorado and are in search of a trustworthy, helpful, and knowledgeable neurologist, I couldn't feel better about recommending Dr. Katalin Pocsine to anyone and everyone - she is a rockstar.
In the time between my appointments, Dr. Pocsine had reached out to Dr. Corboy who runs the Rocky Mountain MS Center and is the guy for MS in Colorado; she ran the facts of my case by him and he agreed with her that she was looking at a pretty clear-cut case of MS. Now while this was an amazing gesture by her, my satisfaction comes from the fact that my first neurologist was also in the meeting in which this discussion was had, and recognized my case by her description, mentioning to Dr. Pocsine that he was pretty sure he'd seen the same patient. I really wish I could have seen the look on his face when Dr. Corboy agreed that the patient being discussed was not having migraines and he could pretty confidently say MS even without seeing the MRI's for himself. Enjoy that ego-check, doctor #1 - you shoulda trusted that I knew my body and my symptoms! (Sorry, couldn't resist.)
Now that I am working with a doctor I trust implicitly, a doctor that listens, that responds quickly and personally any time I reach out with questions or concerns, my MS diagnosis doesn't seem half as intimidating. I realized that very quickly; I was anxious and freaked out and unsure about potentially having MS the entire time I was working with the first neurologist. As soon as I transitioned to Dr. Pocsine's office, I was suddenly confident I could handle it, and that we would handle it together; it transitioned from this looming, scary, "what-if" to a minor life hurdle that I had to make my way over and handle.
So all of that to say: IF YOU AREN'T CONFIDENT IN OR COMFORTABLE WITH YOUR DOCTOR, FIND A NEW ONE. It's okay, they will live, they'll have other patients, they'll still make their absurdly high salaries without you on their patient list - you have to make it about you, because it is. It's your body and your brain and your life and your future. Be selfish and demand the best, because your health is a big deal.
If I could offer one piece of advice to someone working toward a diagnosis or even someone who has already been diagnosed, it would be find a neurologist you trust, who listens to you, and who you feel comfortable with. Don't be afraid to be your own best advocate; neurologists are the key to all things MS in your life, from symptom management, to disease-modifying treatments should you choose to use one, to just general quality of life. You're going to be stuck with them potentially for the rest of your life, so you might as well like them!
I learned this lesson real quick. When I went to my very first neurology appointment in mid-December, at the recommendation of my primary care doc I brought along a timeline of any and every symptom I had experienced: double vision and leg numbness at Halloween, sudden temperature sensitivity mid-November, torso numbness at Thanksgiving, etc. (HIGHLY recommend doing this - it makes your life and the doctor's easier and keeps you from having to remember everything in a stressful situation.) So I pass this timeline along to my neurologist, who puts it in a folder and has me walk him through all my symptoms without even giving it a glance; that probably should have been my first red flag, but I didn't think much of it. I walk him through what I've experienced, no doubt leaving out details along the way trying to recall two and a half months of symptoms from memory. I had already had a brain MRI at this point at the request of my PCP, so he showed me my MRI and said there were no lesions he could see, but he wanted another one done with contrast. He ran threw the litany of neurology tests that make you feel like a bit of an idiot; if you've already seen a neuro you know what I'm talking about - touch your nose, walk heel to toe, rotate your arms, get poked with a safety pin - it feels like you're just being asked to do weird stuff for the doctor's entertainment honestly 😂 Based on the locations of my numbness, he also ordered MRI's of all three sections of my spine; as someone who gets very claustrophobic in MRI machines, I wasn't all that thrilled about that, but thus is life in the world of MS!
Quick break for some MS humor...
Long story short, I get my MRI's done and go in for my follow-up, with some new symptoms like intense muscle cramping in the same areas as I was experiencing numbness. I explain this development to the doc, and he responds with "You've read your books," with a grin and then moves on to talking about my MRI's. I remember just looking at him wanting to go "huh?" but I ignored it and looked at the MRI's that showed a pair of lesions, one on either side of my thoracic spine. Based on this information and his view that I'd had a single "attack," he said he didn't think it was MS, instead he was labeling it as "idiopathic transverse myelitis" - in English, that's a deterioration of myelin (myelitis) on both sides of the spine (transverse) with an unknown cause (idiopathic), likely a one-time virus. He said that my double vision was being caused by migraines despite experiencing no pain and having a history of migraines that always come with debilitating pain. I wasn't convinced on the migraine front, but hey, he's the neurologist, right? He put me on an anti-anxiety medication to address the migraines and said we'd re-scan in a few months to see if there are new lesions; only then, he said, could he diagnosis MS. On our way out of the appointment, I reiterated the "you've read your books" comment and said to T, "I think he was implying I was making it up?" It didn't sit well with T either, but we weren't sure what to do with it, so we let it slide. I found very quickly that the anti-anxiety meds made me feel horrible, triggering extreme anxiety and anxiousness and disrupting my sleep. When I told the doctor, he seemed annoyed; he said I was probably just anxious about my health but we could try another medication "if I really wanted to." That didn't sit well with me, and after the "you've read your books" comment I realized I really wasn't feeling comfortable with this doctor, I'd just been pushing my discomfort aside in favor of his medical degree.
I just happened to have a physical scheduled with my PCP shortly after, and I explained to her what had been going on and how I wasn't sure I liked the neurologist I'd been seeing; again, being totally unfamiliar with this new world of neurology, I asked her if she thought I should get a second opinion or if it was normal to. Being the wonderful doctor and human she is, she looked me square in the face and said, "If you aren't 100% comfortable, then yes, I absolutely think we should find you another option and get this figured out." She referred me to a new neurologist to whom I took the same timeline I'd given the first; she was amazing. She walked through my timeline with me step by step, asking questions, and taking notes along the way. She ran the basic neurological tests, but also ran some vision tests and asked me questions no one had yet asked me, such as "is your double vision side by side or at a diagonal?" That caught me off guard - I hadn't ever thought about it, but it was a level of detail that showed she obviously wanted every little detail. After reviewing my case she looked at me and said, "You are not having migraines, which I think you already know. So you can go ahead and start weaning off that medication." She also explained that based on my timeline, I had not had one attack like the first neuro said, but that it was fairly clear I'd already had three: 1) double vision, 2) left leg, 3) torso - while the double vision and left leg numbness happened at the same time there was no way one lesion could have caused both based on where lesions would have to be located so that was my separation in space required for a diagnosis. The torso numbness nearly a month later gave the required separation in time, and just like that I technically had fulfilled the criteria for MS. To be as sure as she could however, she wanted another brain MRI but with a more detailed/intense machine as she was pretty confident there was a lesion there, we just weren't seeing it on the MRI with lesser detail. Two weeks later I was back in front of her with a more detailed MRI image that, sure enough, showed 2 lesions exactly where she told me she thought they were. If that doesn't instill confidence, I don't know what does. So let me just say, if you happen to be in Colorado and are in search of a trustworthy, helpful, and knowledgeable neurologist, I couldn't feel better about recommending Dr. Katalin Pocsine to anyone and everyone - she is a rockstar.
In the time between my appointments, Dr. Pocsine had reached out to Dr. Corboy who runs the Rocky Mountain MS Center and is the guy for MS in Colorado; she ran the facts of my case by him and he agreed with her that she was looking at a pretty clear-cut case of MS. Now while this was an amazing gesture by her, my satisfaction comes from the fact that my first neurologist was also in the meeting in which this discussion was had, and recognized my case by her description, mentioning to Dr. Pocsine that he was pretty sure he'd seen the same patient. I really wish I could have seen the look on his face when Dr. Corboy agreed that the patient being discussed was not having migraines and he could pretty confidently say MS even without seeing the MRI's for himself. Enjoy that ego-check, doctor #1 - you shoulda trusted that I knew my body and my symptoms! (Sorry, couldn't resist.)
Now that I am working with a doctor I trust implicitly, a doctor that listens, that responds quickly and personally any time I reach out with questions or concerns, my MS diagnosis doesn't seem half as intimidating. I realized that very quickly; I was anxious and freaked out and unsure about potentially having MS the entire time I was working with the first neurologist. As soon as I transitioned to Dr. Pocsine's office, I was suddenly confident I could handle it, and that we would handle it together; it transitioned from this looming, scary, "what-if" to a minor life hurdle that I had to make my way over and handle.
So all of that to say: IF YOU AREN'T CONFIDENT IN OR COMFORTABLE WITH YOUR DOCTOR, FIND A NEW ONE. It's okay, they will live, they'll have other patients, they'll still make their absurdly high salaries without you on their patient list - you have to make it about you, because it is. It's your body and your brain and your life and your future. Be selfish and demand the best, because your health is a big deal.
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