chaoticbynature
Member
- Joined
- Nov 29, 2016
- Messages
- 11
- Reason
- Learn about ALS
- Country
- US
- State
- Colorado
- City
- Fort Collins
I've flirted with the idea of making an account for weeks now, I’ve been unwilling to feed into my own mounting paranoia, and until now I’ve been avoiding looking into the symptoms at all, but I’ve also found myself in need of community and the presence of those who can help me understand what is happening to me.
I’m frightened, and I’m very alone. I need a place that I can put this fear out there. My inability to maintain the college lifestyle level of activity has isolated me from the friends I had made, and this ordeal is already concerning my parents and I don’t want to add to that by having them worry about my mental health and my fears when this could still be nothing. I’m trying to keep my spirits high and be optimistic as possible for them.
I’m currently in the diagnosis phase, and have been for a few months now, but every appointment has lead to more questions instead of answers. My neurologist brought up ALS, but she says she’s going to do everything possible to find another answer, and she was optimistic that it was MS. My MRI came back clean and the next step is to look at the spectrum of autoimmune disorders.
I had been experiencing symptoms in the months before I even realized that there was any deeper problem. I was falling frequently, stumbling my way across campus, but I wrote it off as being clumsy or tired. I was never exactly a graceful child. I would laugh it off and move on. The falls continued to become more frequent and my coordination worsened in my hand. I would struggle to get the lid open on my water-bottle, I became intensely grateful for investing in an otter-box case for my phone, and I found myself stumbling more and more over familiar but simple piano music, fingers unwilling to move coherently across the keys.
Still I passed it off as clumsiness or exhaustion. Everything exhausted me, I would tire just walking out of my building, and make the excuse that I’m just an old lady at heart. I gave up styling my hair because I just couldn’t do the back of my hair and I opted for cutting it short enough that if I can’t brush it that day, it isn’t as noticeable. I began to make frequent mistakes in regard to typing everything on the keyboard left of o, l, and .
One week I had a series of migraines that cumulated in what my doctor is currently calling a silent migraine. This was my first one, while I had a history of migraines which we recently learned was due to high altitude, this migraine was terrifying. There was no pain but all light was blinding and blurry, and my clumsiness was far worse and I was experiencing alarming and wide spread numbness. Not knowing what was happening, I went to the school’s triage service. The doctor noticed demonstrated weakness at this time, and decided that all of my symptoms equaled a stroke and she sent me to the emergency room.
The emergency room doctor wasn’t impressed by the idea of a stroke, gave me a migraine cocktail, a bag of fluid, and stuck me in a dark corner and checked back later. Lo and behold, I could see again and the world had given up spinning. He told me that he had some concerns that this could be more than a migraine, but I would need to follow up with my doctor and he sent me back to my dorm with instructions to get some rest.
A few days later I had a follow up with the doctor from the school and the weakness had not absolved. She decided that we should treat it as an ongoing migraine episode and medicated accordingly. The medication only seemed to have negative effects and I was pulled off of it later that week, and she attempted to refer me to a neurologist, but everything in town was booked four to six months out.
The following Monday I saw my primary care manager and what was supposed to be a routine follow up for hospitalization turned into hours of balance and motion tests and sitting in the waiting room while he and his nurse called imaging centers and neurologists up and down the 25 trying to schedule the appointments for the same week. He succeeded in getting them both in the same town that the school hadn’t been able to. He was convinced that this wasn’t clumsiness or exhaustion or ongoing silent migraines.
It wasn’t until the tests the neurologist performed that I realized just how much things had changed from the previous year when I had gone through a medical evaluation. My left hand, my pathetically uncoordinated left hand made touching my fingers to my thumb look easy in comparison to the slow and laborious efforts of my right, and the difference in grip was dramatic. My right foot didn’t want to stay straight, and it dragged slightly in comparison to the other. I managed the heel walk in very short steps, but I stumbled through the toe walk.
My reflexes were apparently of great interest to her and she commented that I must be very relaxed at first, but then she noted that my reflexes were very uneven and the reflex reaction in my right leg was far more dramatic. I could not hold my right arm out and keep it at the same height as my other arm, and no matter how I tried I could not push her away with my right arm or leg and I couldn’t shrug my shoulder quite as high with her pushing down on it, but the difference wasn't as dramatic.
She grilled my mother who had come for the appointment about in depth extended family history. My great aunt had died within a year of being diagnosed with ALS, and her son had another motor neuron disease that was not ALS were the most notable that came up in the discussion. I was not familiar at the time with the details of my great aunts illness. I knew she was ill, and she was harder to understand on the phone, and I understood that her mobility was impaired, but past that I was in the dark on the disease.
I was prescribed a wheelchair to use when needed to reduce falls and conserve strength, but at the time they were concerned about the rate of my decline and they recommended that we not put it through our insurance so we would be able to file for a motorized chair and just rent a wheelchair out of pocket that I could use as both a wheelchair and a walker to help with balance when crossing campus.
However, I’m stubborn and I didn’t want to lose more of what I viewed as independence but in reality comes down more to self-image, so I fought the chair. I despised the idea of the chair and it spent the majority of its time in a corner of my dorm, used to hold laundry that I didn’t feel like putting away. When I started missing over half of my classes per week I finally admitted to needing it, and it helped for a while, when I was tired or had a long way to go I would use the chair, but two months into using the chair, I’m already unable to push it forward with my arms to cross campus.
Months into this now, without answers and still declining, I’m terrified of the unknown, I’m transferring closer to home so I can be near my main medical team and because there are aspects of self-care I’m no longer capable of and need to learn new work arounds for. I know this is long, but now I’m just terribly alone, and terribly frightened.
I’m frightened, and I’m very alone. I need a place that I can put this fear out there. My inability to maintain the college lifestyle level of activity has isolated me from the friends I had made, and this ordeal is already concerning my parents and I don’t want to add to that by having them worry about my mental health and my fears when this could still be nothing. I’m trying to keep my spirits high and be optimistic as possible for them.
I’m currently in the diagnosis phase, and have been for a few months now, but every appointment has lead to more questions instead of answers. My neurologist brought up ALS, but she says she’s going to do everything possible to find another answer, and she was optimistic that it was MS. My MRI came back clean and the next step is to look at the spectrum of autoimmune disorders.
I had been experiencing symptoms in the months before I even realized that there was any deeper problem. I was falling frequently, stumbling my way across campus, but I wrote it off as being clumsy or tired. I was never exactly a graceful child. I would laugh it off and move on. The falls continued to become more frequent and my coordination worsened in my hand. I would struggle to get the lid open on my water-bottle, I became intensely grateful for investing in an otter-box case for my phone, and I found myself stumbling more and more over familiar but simple piano music, fingers unwilling to move coherently across the keys.
Still I passed it off as clumsiness or exhaustion. Everything exhausted me, I would tire just walking out of my building, and make the excuse that I’m just an old lady at heart. I gave up styling my hair because I just couldn’t do the back of my hair and I opted for cutting it short enough that if I can’t brush it that day, it isn’t as noticeable. I began to make frequent mistakes in regard to typing everything on the keyboard left of o, l, and .
One week I had a series of migraines that cumulated in what my doctor is currently calling a silent migraine. This was my first one, while I had a history of migraines which we recently learned was due to high altitude, this migraine was terrifying. There was no pain but all light was blinding and blurry, and my clumsiness was far worse and I was experiencing alarming and wide spread numbness. Not knowing what was happening, I went to the school’s triage service. The doctor noticed demonstrated weakness at this time, and decided that all of my symptoms equaled a stroke and she sent me to the emergency room.
The emergency room doctor wasn’t impressed by the idea of a stroke, gave me a migraine cocktail, a bag of fluid, and stuck me in a dark corner and checked back later. Lo and behold, I could see again and the world had given up spinning. He told me that he had some concerns that this could be more than a migraine, but I would need to follow up with my doctor and he sent me back to my dorm with instructions to get some rest.
A few days later I had a follow up with the doctor from the school and the weakness had not absolved. She decided that we should treat it as an ongoing migraine episode and medicated accordingly. The medication only seemed to have negative effects and I was pulled off of it later that week, and she attempted to refer me to a neurologist, but everything in town was booked four to six months out.
The following Monday I saw my primary care manager and what was supposed to be a routine follow up for hospitalization turned into hours of balance and motion tests and sitting in the waiting room while he and his nurse called imaging centers and neurologists up and down the 25 trying to schedule the appointments for the same week. He succeeded in getting them both in the same town that the school hadn’t been able to. He was convinced that this wasn’t clumsiness or exhaustion or ongoing silent migraines.
It wasn’t until the tests the neurologist performed that I realized just how much things had changed from the previous year when I had gone through a medical evaluation. My left hand, my pathetically uncoordinated left hand made touching my fingers to my thumb look easy in comparison to the slow and laborious efforts of my right, and the difference in grip was dramatic. My right foot didn’t want to stay straight, and it dragged slightly in comparison to the other. I managed the heel walk in very short steps, but I stumbled through the toe walk.
My reflexes were apparently of great interest to her and she commented that I must be very relaxed at first, but then she noted that my reflexes were very uneven and the reflex reaction in my right leg was far more dramatic. I could not hold my right arm out and keep it at the same height as my other arm, and no matter how I tried I could not push her away with my right arm or leg and I couldn’t shrug my shoulder quite as high with her pushing down on it, but the difference wasn't as dramatic.
She grilled my mother who had come for the appointment about in depth extended family history. My great aunt had died within a year of being diagnosed with ALS, and her son had another motor neuron disease that was not ALS were the most notable that came up in the discussion. I was not familiar at the time with the details of my great aunts illness. I knew she was ill, and she was harder to understand on the phone, and I understood that her mobility was impaired, but past that I was in the dark on the disease.
I was prescribed a wheelchair to use when needed to reduce falls and conserve strength, but at the time they were concerned about the rate of my decline and they recommended that we not put it through our insurance so we would be able to file for a motorized chair and just rent a wheelchair out of pocket that I could use as both a wheelchair and a walker to help with balance when crossing campus.
However, I’m stubborn and I didn’t want to lose more of what I viewed as independence but in reality comes down more to self-image, so I fought the chair. I despised the idea of the chair and it spent the majority of its time in a corner of my dorm, used to hold laundry that I didn’t feel like putting away. When I started missing over half of my classes per week I finally admitted to needing it, and it helped for a while, when I was tired or had a long way to go I would use the chair, but two months into using the chair, I’m already unable to push it forward with my arms to cross campus.
Months into this now, without answers and still declining, I’m terrified of the unknown, I’m transferring closer to home so I can be near my main medical team and because there are aspects of self-care I’m no longer capable of and need to learn new work arounds for. I know this is long, but now I’m just terribly alone, and terribly frightened.
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