AnxiousWaiting
Member
- Joined
- Dec 18, 2016
- Messages
- 19
- Reason
- Loved one DX
- Country
- NA
- State
- DC
- City
- DC
Before writing further, I want to note that I have read the Common Concern and getting a diagnosis stickies. I hesitated to even describe my symptoms because several would seem to point in contrary directions from ALS. However, I'm going to post here regardless because (1) some symptoms do seem to match a motor neuron disease profile and (2) my mother has ALS and there is Parkinsons in her direct line of ancestors. On point 2, it's my understanding that a genetic link between ALS and Parkinsons has been contemplated.
So here goes: my main symptom has been stiffness and fine motor problems in my thumbs. Bilateral. I have trouble buttoning my clothes and applying pressure to a razor so that I can shave naturally. I drop things, sometimes after feeling what I can only describe as a spasm across my chest and shoulders. On cold days, I struggle to tie my shoe laces. All these symptoms seem to have come on in the past month.
I have numbness in my fingertips and shivering sensations up and down my arms. Sometimes these sensations extend into my face. My arms look skinnier to me. But, it's true, I can't claim that it's "impossible" to do anything that I've done before. It's just more challenging on the fine motor, hand stuff.
My internist diagnosed me with carpal tunnel. Neurologist did a full physical exam and noted both carpal tunnel and some ulnar compression. He could not explain why the symptoms came on so suddenly, in the last month. There is not much pain associated with the stiffness in the thumbs, though there was pain in the exam when he tested the median nerves.
MRI showed pinched nerves and disc herniation at the C5-C6 and C6-C7 levels. No lesions evidencing MS.
I feel weak overall. Shivering sensations. I see fasciculations sometimes under my thumb and wrist. When I wake up in the middle of the night, I sometimes see fasciculations, but they're most often concurrent with tightness and burning in my back near where the pinched nerves originate. Not much pain at all. Pangs and numbness.
Carpal tunnel braces have helped me to hold things. But my mother uses braces now as her fingers get weak from ALS; they help her too at this stage. Ibuprofen seems to help with the neck and shoulder and pain and some of the thumb stiffness.
That's where I am right now. I've scheduled an EMG, but not sure that I really want to go through with it until the holidays are over and until my symptoms have worsened. Maybe I won't ever be able to bring myself to go through with it.
What do you all think? I realize that most folks commenting here are suffering from a terrible disease, one I've come to know all too well from my mother. And at some level, since I don't have a diagnosis yet and don't have a treatment decision to make, my question is driven largely by anxiety. Note that the neurologist and the neurosurgeon (who considered my symptoms and MRI report over the phone and with whom I've scheduled an appt ) have not taken my ALS concerns seriously because of the physical exam and the sensory symptoms. But the fine motor control issues in my thumbs as well as the "spasms" that have led me to drop things leaves ALS very much in my mind. And, of course, I was with my mother at the numerous appointments where neurologists attributed her ALS symptoms to benign causes until getting her to an ALS specialist for an EMG . . . .
Also, for those of you who have had EMGs, what was the experience like? If there's another forum on which I should post that question, please let me know. I'm dreading the thought of hearing techs and doctors talking about denervation while I get turned into a pin cushion.
Thanks!
So here goes: my main symptom has been stiffness and fine motor problems in my thumbs. Bilateral. I have trouble buttoning my clothes and applying pressure to a razor so that I can shave naturally. I drop things, sometimes after feeling what I can only describe as a spasm across my chest and shoulders. On cold days, I struggle to tie my shoe laces. All these symptoms seem to have come on in the past month.
I have numbness in my fingertips and shivering sensations up and down my arms. Sometimes these sensations extend into my face. My arms look skinnier to me. But, it's true, I can't claim that it's "impossible" to do anything that I've done before. It's just more challenging on the fine motor, hand stuff.
My internist diagnosed me with carpal tunnel. Neurologist did a full physical exam and noted both carpal tunnel and some ulnar compression. He could not explain why the symptoms came on so suddenly, in the last month. There is not much pain associated with the stiffness in the thumbs, though there was pain in the exam when he tested the median nerves.
MRI showed pinched nerves and disc herniation at the C5-C6 and C6-C7 levels. No lesions evidencing MS.
I feel weak overall. Shivering sensations. I see fasciculations sometimes under my thumb and wrist. When I wake up in the middle of the night, I sometimes see fasciculations, but they're most often concurrent with tightness and burning in my back near where the pinched nerves originate. Not much pain at all. Pangs and numbness.
Carpal tunnel braces have helped me to hold things. But my mother uses braces now as her fingers get weak from ALS; they help her too at this stage. Ibuprofen seems to help with the neck and shoulder and pain and some of the thumb stiffness.
That's where I am right now. I've scheduled an EMG, but not sure that I really want to go through with it until the holidays are over and until my symptoms have worsened. Maybe I won't ever be able to bring myself to go through with it.
What do you all think? I realize that most folks commenting here are suffering from a terrible disease, one I've come to know all too well from my mother. And at some level, since I don't have a diagnosis yet and don't have a treatment decision to make, my question is driven largely by anxiety. Note that the neurologist and the neurosurgeon (who considered my symptoms and MRI report over the phone and with whom I've scheduled an appt ) have not taken my ALS concerns seriously because of the physical exam and the sensory symptoms. But the fine motor control issues in my thumbs as well as the "spasms" that have led me to drop things leaves ALS very much in my mind. And, of course, I was with my mother at the numerous appointments where neurologists attributed her ALS symptoms to benign causes until getting her to an ALS specialist for an EMG . . . .
Also, for those of you who have had EMGs, what was the experience like? If there's another forum on which I should post that question, please let me know. I'm dreading the thought of hearing techs and doctors talking about denervation while I get turned into a pin cushion.
Thanks!