fitzroy
Active member
- Joined
- Nov 28, 2011
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- 99
- Reason
- Learn about ALS
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- AU
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- VIC
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- Mel
A question about the next neurology appointment
I essentially have three options
1) NCS/EMG at my current hospital through my Neuromuscular specialist
2) NCS/EMG with consult with the first Neurologist to give me an NCS and Sympathetic Skin Response test
3) Do nothing
My recent appointment with the neuromuscular specialist was extremely disappointing.
She'd done a history and exam, noted weakness and atrophy and ordered a Qualitative Sensory Test (QST) and sfEMG at my first appointment early last year. The sfEMG was normal. The QST very much abnormal. I'd had a mostly normal EMG, a normal NCS and a mildly abnormal Sympathetic Skin Response (SSR) a few months prior. At the followup, there was no real clarification of the QST results, nor why she'd ordered it. I made no further inquiries or appointments. As way of background, I've also had a full spinal MRI as well as MRIs of both hands. No obvious mechanical abnormalities were noted.
Fast forward, my hands still have problems. My GP is concerned about the changes. My Rhuemy commenting how the atrophy is so focal. The main location is in the thenar eminence area on both hands. It used to be worse on the left hand, it's now more advanced on the right. I'm left hand dominant. There's some loss of function, but the most irritating aspect is the constant aching in the same general region along with a fair amount of weakness.
Back to today
I no longer care what the cause might be. I've won enough diagnosis in the last three years that I get to live with and be treated for in perpetuity. I just want help with the things I can't manage on my own.
The NM specialist left me adrift. She made some failed attempts at empathising with my autoimmune issues that were completely off base. Didn't manage to clearly explain why she'd ordered the QST in the first place, much less the results. Proceeded to do a cursory exam stating there was nothing neurological she could see and then ordered another NCS/EMG. She'd previously noted weakness, atrophy and reflex issues and even mentioned those issues again in her dictation at the end of my recent appointment.
I challenged her on the need for the EMG if she thought there were no apparent neurological issues. I'd rather avoid procedures if there's no justification. I already get to visit doctors multiple times a month and have IV infusions just about as frequently. She said it would be a good idea, but it was obviously my choice.
So, to the questions.
My GP has written a referral for an NCS/EMG to the neurologist who did the first NCS with the sympathetic skin response test and had suggested a QST as a possible follow up. The NM specialist referred me to the neurophysiology department at the hospital I attend for most of my other treatments for a similar workup to be followed up with her.
One very large part of me doesn't want to do either. The doctors that are actively involved in my treatment are at stumps. I honestly don't think another NCS/EMG will show anything new or relevant. I also don't think there is anything particularly sinister in play. Just some slowly developing and very distracting problems.
I know none of this is directly related to ALS or MND other than an early differential assessment for anterior horn cell disease. I just needed a safe place to rant and spell out my thinking for myself.
I essentially have three options
1) NCS/EMG at my current hospital through my Neuromuscular specialist
2) NCS/EMG with consult with the first Neurologist to give me an NCS and Sympathetic Skin Response test
3) Do nothing
My recent appointment with the neuromuscular specialist was extremely disappointing.
She'd done a history and exam, noted weakness and atrophy and ordered a Qualitative Sensory Test (QST) and sfEMG at my first appointment early last year. The sfEMG was normal. The QST very much abnormal. I'd had a mostly normal EMG, a normal NCS and a mildly abnormal Sympathetic Skin Response (SSR) a few months prior. At the followup, there was no real clarification of the QST results, nor why she'd ordered it. I made no further inquiries or appointments. As way of background, I've also had a full spinal MRI as well as MRIs of both hands. No obvious mechanical abnormalities were noted.
Fast forward, my hands still have problems. My GP is concerned about the changes. My Rhuemy commenting how the atrophy is so focal. The main location is in the thenar eminence area on both hands. It used to be worse on the left hand, it's now more advanced on the right. I'm left hand dominant. There's some loss of function, but the most irritating aspect is the constant aching in the same general region along with a fair amount of weakness.
Back to today
I no longer care what the cause might be. I've won enough diagnosis in the last three years that I get to live with and be treated for in perpetuity. I just want help with the things I can't manage on my own.
The NM specialist left me adrift. She made some failed attempts at empathising with my autoimmune issues that were completely off base. Didn't manage to clearly explain why she'd ordered the QST in the first place, much less the results. Proceeded to do a cursory exam stating there was nothing neurological she could see and then ordered another NCS/EMG. She'd previously noted weakness, atrophy and reflex issues and even mentioned those issues again in her dictation at the end of my recent appointment.
I challenged her on the need for the EMG if she thought there were no apparent neurological issues. I'd rather avoid procedures if there's no justification. I already get to visit doctors multiple times a month and have IV infusions just about as frequently. She said it would be a good idea, but it was obviously my choice.
So, to the questions.
My GP has written a referral for an NCS/EMG to the neurologist who did the first NCS with the sympathetic skin response test and had suggested a QST as a possible follow up. The NM specialist referred me to the neurophysiology department at the hospital I attend for most of my other treatments for a similar workup to be followed up with her.
One very large part of me doesn't want to do either. The doctors that are actively involved in my treatment are at stumps. I honestly don't think another NCS/EMG will show anything new or relevant. I also don't think there is anything particularly sinister in play. Just some slowly developing and very distracting problems.
I know none of this is directly related to ALS or MND other than an early differential assessment for anterior horn cell disease. I just needed a safe place to rant and spell out my thinking for myself.
