DayHiker
Member
- Joined
- May 5, 2018
- Messages
- 15
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- VT
- City
- Montpelier
First I want to thank the administrators and moderators of this forum for providing this resource despite battling a terrible disease. I send all of you much respect and admiration. I have read the stickies in this forum and will try to abide by all of your rules.
My situation is that I am being seen by a neurologist for an undiagnosed condition that seems to be localized to the C4 area of my cervical spine. My physical signs so far are restricted to my right leg and arm and are: hyperreflexia in the knee, ankle clonus, and general spasticity and hypertonia in both limbs. My neuro also told me at my last appointment on Tuesday that I have some weakness in my right hamstring, but that this is consistent with the other UMN signs. She says that I have absolutely zero signs of LMN involvement: no fasciculations, no atrophy, and no muscle weakness other than the hamstring.
My symptoms started in early June 2017 with subjective weakness in my right leg, a feeling that my foot was going to "give" at the ankle. I am also a private pilot, and noticed a couple of times that when applying the brakes while running up the engine, my right foot would begin to shake uncontrollably. I had to adjust the seat position to prevent this from happening. I knew from reading that this was likely clonus and immediately started the process toward being seen by a neurologist. My first appointment was in September 2017 and bloodwork was immediately ordered, all came back negative: B-12, Lyme, Vitamin D, thyroid. Her dx was C-spine myelopathy, possibly due to cervical stenosis.
MRIs of the cervical and thoracic spine were done in November. The thoracic was negative, but the C-spine showed a small lesion around C4 that was "suspicious for demyelination, possibly due to MS". My neuro said she suspected I had had an attack of transverse myelitis. The only question was whether it was "clinically isolated" or part of something more widespread like MS.
A brain MRI in December showed only nonspecific white matter changes, but no clear signs of MS. Nevertheless, my neuro has always said that MS was on the table.
But she said from the outset, and still maintains, that this is definitely NOT ALS and almost certainly not any form of MND. Partly I think this is because she found I had decreased vibratory sense in my right leg and frank numbness between the toes of my right foot. I also have electric shock sensations in the sole of my right foot after hiking, though it's not clear whether this is related. Mainly, she says that if this were ALS, I would have some form of disability by now. It is true that I can still do everything I could, though I have some cramping and tightness in my leg when I walk and my right arm tends to go into spasm when working at the computer (last few days especially). I'm a professor and find that after lecturing for an hour my right leg feels like a piece of wood and I need to sit down. But I have had no falls due to weakness, no foot drop, and no muscle failures. I continue to walk to work and for exercise and hope to return to hiking as soon as the mud on the trails goes away.
The real shocker is that I had a followup C-spine MRI in March to document any progression of the lesion. The report said that there was no sign of the earlier lesion and the radiologist suspects that it was an artifact. My neurologist disagrees and says that the imaged lesion explained my symptoms so perfectly that she believes it was an inflammatory lesion that has resolved. She says that spasticity can continue to progress for months and even years after an insult to the spinal cord has apparently resolved.
I am concerned that she may be suffering from confirmation bias.
She has me scheduled for a lumbar puncture on the 16th, and an evoked potentials study has still to be scheduled. She considers doing an EMG "very low priority" but did say that if the LP and EP come back negative that she will recommend that I get a second opinion. She says that I should probably go to an MS clinic but would be okay with my going to a neuromuscular clinic if I prefer.
My questions are:
1. Am I being unreasonable to question my neurologist's conclusions?
2. Has anyone here gone on, from purely UMN signs with no real disability for more than 9 months, to an ALS diagnosis?
3. Should ALS be on the table here?
4. Should I be pushing harder for an EMG or neuromuscular consult?
Sorry for the length of this, and thanks in advance for reading.
My situation is that I am being seen by a neurologist for an undiagnosed condition that seems to be localized to the C4 area of my cervical spine. My physical signs so far are restricted to my right leg and arm and are: hyperreflexia in the knee, ankle clonus, and general spasticity and hypertonia in both limbs. My neuro also told me at my last appointment on Tuesday that I have some weakness in my right hamstring, but that this is consistent with the other UMN signs. She says that I have absolutely zero signs of LMN involvement: no fasciculations, no atrophy, and no muscle weakness other than the hamstring.
My symptoms started in early June 2017 with subjective weakness in my right leg, a feeling that my foot was going to "give" at the ankle. I am also a private pilot, and noticed a couple of times that when applying the brakes while running up the engine, my right foot would begin to shake uncontrollably. I had to adjust the seat position to prevent this from happening. I knew from reading that this was likely clonus and immediately started the process toward being seen by a neurologist. My first appointment was in September 2017 and bloodwork was immediately ordered, all came back negative: B-12, Lyme, Vitamin D, thyroid. Her dx was C-spine myelopathy, possibly due to cervical stenosis.
MRIs of the cervical and thoracic spine were done in November. The thoracic was negative, but the C-spine showed a small lesion around C4 that was "suspicious for demyelination, possibly due to MS". My neuro said she suspected I had had an attack of transverse myelitis. The only question was whether it was "clinically isolated" or part of something more widespread like MS.
A brain MRI in December showed only nonspecific white matter changes, but no clear signs of MS. Nevertheless, my neuro has always said that MS was on the table.
But she said from the outset, and still maintains, that this is definitely NOT ALS and almost certainly not any form of MND. Partly I think this is because she found I had decreased vibratory sense in my right leg and frank numbness between the toes of my right foot. I also have electric shock sensations in the sole of my right foot after hiking, though it's not clear whether this is related. Mainly, she says that if this were ALS, I would have some form of disability by now. It is true that I can still do everything I could, though I have some cramping and tightness in my leg when I walk and my right arm tends to go into spasm when working at the computer (last few days especially). I'm a professor and find that after lecturing for an hour my right leg feels like a piece of wood and I need to sit down. But I have had no falls due to weakness, no foot drop, and no muscle failures. I continue to walk to work and for exercise and hope to return to hiking as soon as the mud on the trails goes away.
The real shocker is that I had a followup C-spine MRI in March to document any progression of the lesion. The report said that there was no sign of the earlier lesion and the radiologist suspects that it was an artifact. My neurologist disagrees and says that the imaged lesion explained my symptoms so perfectly that she believes it was an inflammatory lesion that has resolved. She says that spasticity can continue to progress for months and even years after an insult to the spinal cord has apparently resolved.
I am concerned that she may be suffering from confirmation bias.
She has me scheduled for a lumbar puncture on the 16th, and an evoked potentials study has still to be scheduled. She considers doing an EMG "very low priority" but did say that if the LP and EP come back negative that she will recommend that I get a second opinion. She says that I should probably go to an MS clinic but would be okay with my going to a neuromuscular clinic if I prefer.
My questions are:
1. Am I being unreasonable to question my neurologist's conclusions?
2. Has anyone here gone on, from purely UMN signs with no real disability for more than 9 months, to an ALS diagnosis?
3. Should ALS be on the table here?
4. Should I be pushing harder for an EMG or neuromuscular consult?
Sorry for the length of this, and thanks in advance for reading.