Hello. This is my first post & I apologize in advance because it will be lengthy.
A bit about my past & current medical history: I have had two brain surgeries to remove a benign but recurring brain tumor, once in 1993 and again in 2011. According to my neurosurgeon and based on what inexperienced during the 18 years between surgeries and the first three years after the second, I should not have (and did not) suffer any negative post-surgical effects except for minor facial nerve damage & 75% hearing loss in my left ear that was unavoidable due to the tumor's location.
I suffer from frequent migraines and have since childhood, and am currently being treated for those. I also have fibromyalgia and a herniated disc at L4/L5 that I see a pain specialist for monthly. I also have four children, the last three of whom were delivered by C-section in 2007, 2009, and 2011. That, in a nutshell, is my significant medical history according to my official medical records.
However. Over the past year/eighteen months, things just haven't been right. My feet have been burning/tingling/going numb a lot, in ways they never have before and it feels different than the pain that I'm familiar with from my back injury. I have also been experiencing the same numbness and tingling in my arms and hands, especially in my ring and little fingers.
I am having a lot of cognitive dysfunction. My vocabulary is huge and I have always been incredibly articulate but now I get stuck and can't even tell my kids to put their dirty dishes in the sink because I can't find the word "sink" when I get there while I'm speaking the sentence out loud. I'll forget conversations that I've had with my husband or oldest daughter all the time & they think it's because I'm not listening to them or paying attention, but really it's just that I couldn't retain the information.
I'm exhausted all the time. More than I was when I had a newborn and two toddlers. I wake up in the morning feeling like I got hit by a bus.
I woke up one morning last fall and it felt like while I was sleeping someone had removed my arms and filled them with warm, buzzy sawdust, and then reattached them. They didn't really feel like they were entirely a part of me anymore, even though they still did what I told them to do. They felt that way for about a month.
When I talked to my doctor about it she ordered a nerve conduction test to check for carpal tunnel & a cervical X-ray to see if anything was out of place in my C-spine, but both of those came back normal. I told her, "I know this is going to make me sound like a total hypochondriac, but I was wondering if it would be worth exploring the possibility of MS?" To her credit, although she kinda rolled her eyes, she didn't brush me off immediately. What she did was order my last routine brain MRI results (I have them yearly due to my history) and when they showed no lesions she said, "No lesions, no MS."
I know that there are so many things that could be causing my symptoms, but what I've shared here is honestly just the tip of the iceberg for me symptomatically. I worked for years in nursing homes closely with several MS patients and have known quite a few people in my personal life with MS and right now with everything that is going on with me, I see myself in what I saw with them.
Right now I just want to talk to a doctor who will take my concerns seriously, who will listen to my symptoms, who I can feel safe sharing my concerns with, and who will order the right tests and work with me to find or rule out a diagnosis. I have found a doctor that I want to see, one with glowing patient reviews, but I need a referral to see her and I don't think that my "no lesions, no MS" doctor takes me seriously enough at this point to give me that referral.
How do you start a dialogue with a doctor to convince them that you're not being a hypochondriac, that all of your weird little symptoms are actually impacting your quality of life and ability to care for your family, and get them to engage with you and become a proactive part of your medical care?
Thank you for reading!
A bit about my past & current medical history: I have had two brain surgeries to remove a benign but recurring brain tumor, once in 1993 and again in 2011. According to my neurosurgeon and based on what inexperienced during the 18 years between surgeries and the first three years after the second, I should not have (and did not) suffer any negative post-surgical effects except for minor facial nerve damage & 75% hearing loss in my left ear that was unavoidable due to the tumor's location.
I suffer from frequent migraines and have since childhood, and am currently being treated for those. I also have fibromyalgia and a herniated disc at L4/L5 that I see a pain specialist for monthly. I also have four children, the last three of whom were delivered by C-section in 2007, 2009, and 2011. That, in a nutshell, is my significant medical history according to my official medical records.
However. Over the past year/eighteen months, things just haven't been right. My feet have been burning/tingling/going numb a lot, in ways they never have before and it feels different than the pain that I'm familiar with from my back injury. I have also been experiencing the same numbness and tingling in my arms and hands, especially in my ring and little fingers.
I am having a lot of cognitive dysfunction. My vocabulary is huge and I have always been incredibly articulate but now I get stuck and can't even tell my kids to put their dirty dishes in the sink because I can't find the word "sink" when I get there while I'm speaking the sentence out loud. I'll forget conversations that I've had with my husband or oldest daughter all the time & they think it's because I'm not listening to them or paying attention, but really it's just that I couldn't retain the information.
I'm exhausted all the time. More than I was when I had a newborn and two toddlers. I wake up in the morning feeling like I got hit by a bus.
I woke up one morning last fall and it felt like while I was sleeping someone had removed my arms and filled them with warm, buzzy sawdust, and then reattached them. They didn't really feel like they were entirely a part of me anymore, even though they still did what I told them to do. They felt that way for about a month.
When I talked to my doctor about it she ordered a nerve conduction test to check for carpal tunnel & a cervical X-ray to see if anything was out of place in my C-spine, but both of those came back normal. I told her, "I know this is going to make me sound like a total hypochondriac, but I was wondering if it would be worth exploring the possibility of MS?" To her credit, although she kinda rolled her eyes, she didn't brush me off immediately. What she did was order my last routine brain MRI results (I have them yearly due to my history) and when they showed no lesions she said, "No lesions, no MS."
I know that there are so many things that could be causing my symptoms, but what I've shared here is honestly just the tip of the iceberg for me symptomatically. I worked for years in nursing homes closely with several MS patients and have known quite a few people in my personal life with MS and right now with everything that is going on with me, I see myself in what I saw with them.
Right now I just want to talk to a doctor who will take my concerns seriously, who will listen to my symptoms, who I can feel safe sharing my concerns with, and who will order the right tests and work with me to find or rule out a diagnosis. I have found a doctor that I want to see, one with glowing patient reviews, but I need a referral to see her and I don't think that my "no lesions, no MS" doctor takes me seriously enough at this point to give me that referral.
How do you start a dialogue with a doctor to convince them that you're not being a hypochondriac, that all of your weird little symptoms are actually impacting your quality of life and ability to care for your family, and get them to engage with you and become a proactive part of your medical care?
Thank you for reading!
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