brentonjb
Active member
- Joined
- Jan 20, 2011
- Messages
- 49
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- FL
- City
- Orlando
Hi Everyone! I was hoping to get some perspective after a neuro appointment and testing earlier.
For clarification, I posted here about a decade ago. At that time, I had a really difficult time recovering from jaw surgery (underbite fix and tongue reduction), which also seemingly promoted a host of perceived weakness and sensory/neurological issues throughout my entire body. After a battery of tests, I was ultimately (or essentially) placed in a 'wait and see' pattern for the next five years. Eventually in 2017/2018, I was diagnosed with cramp fasciculation syndrome by a university specialist. The consensus was that while I had fasciculations observed in various EMGs, there was never both active and chronic denervation identified (irrc), nor did I display any clinical weakness during this period.
Fast forward to this year. After several years of various BFS/CFS flare ups, I developed near constant sensory issues (pain + buzzing + numbness) in my hand. Therefore, having moved too far from my prior university neuro, I found a new neuromuscular specialist in my area and made an appointment with them. From my perspective, I assumed that I had potentially developed carpel tunnel syndrome. Along with that, the frequency of my fasciculations increased dramatically, but I attributed that to stress/dealing with my hand pain.
Today was my appointment. The Neuro performed their clinical, and everything was normal (in the limbs), except for my tongue. Neuro flat out said "You have weakness in your tongue". Neuro stated this while creating resistance / pushing against my tongue with my mouth closed, which she stated was 'clinically weak'. Immediately, I became a little concerned. I made a point to mention my prior surgery, but the neuro seemingly was unmoved by that context.
After the clinical exam, the neuro offers to perform a same day EMG. (Note: the offer was due to appointment cancellations, as they had 1-2 EMGs scheduled after me that cancelled - so super fortunate on my part it seemed).
So the EMG is performed, and it's essentially normal, with the exception of fasciculations seen in the calf. Areas tested were one hand, same arm, neck, back and one leg. Neuro did not test tongue or 'bulbar region'. Afterwards, I asked for their thoughts and it basically went like this (paraphrasing):
Neuro: Test went well, everything was very quiet, and only noticed some rare fasciculations
Me: That's good, right?
Neuro: Yes, I'd still like to do some genetic testing. There's neuromuscular stuff that can cause tongue weakness or sensory issues
**some back and fourth about carpel tunnel and the nerve study - which came back normal**
Me: Are you also testing for MND, should I be worried about ALS at all still?
Neuro: Well, anyone can develop anything, so it's hard to ever say, but I wouldn't worry about it in this moment
Me: That doesn't make me feel much better
Neuro: Oh don't worry, if you had ALS, I would have told you or seen it when you walked in, and I don't think you do right now
In conclusion, while I can appreciate the neuro saying she doesn't feel I have MND (which I'm thankful for), her phrasing felt odd and a bit calculated, sort of suggesting 'not right now' or 'in this moment' twice. It just didn't feel like a firm answer, which is the opposite of what I experienced over the last decade if the topic of MND came up. The entire conversation left me feeling a bit confused. Finally, the tongue weakness comment/analysis surprised me, both because A). I haven't really had any slurring or choking on foods - maybe some hoarseness, but thought it was allergies/the cold....and B). While the neuro seemed concerned by it during the clinical exam, she didn't seemingly test for it during the needle portion. Therefore, I'm just looking for some perspective on the following 2 questions:
1. Would tongue/bulbar weakness show up on limb EMG study/findings?
2. Do you feel I'm over-thinking the conversation? I would imagine the statistical probability of me showing MND weakness after 10 years to be quite low?
For clarification, I posted here about a decade ago. At that time, I had a really difficult time recovering from jaw surgery (underbite fix and tongue reduction), which also seemingly promoted a host of perceived weakness and sensory/neurological issues throughout my entire body. After a battery of tests, I was ultimately (or essentially) placed in a 'wait and see' pattern for the next five years. Eventually in 2017/2018, I was diagnosed with cramp fasciculation syndrome by a university specialist. The consensus was that while I had fasciculations observed in various EMGs, there was never both active and chronic denervation identified (irrc), nor did I display any clinical weakness during this period.
Fast forward to this year. After several years of various BFS/CFS flare ups, I developed near constant sensory issues (pain + buzzing + numbness) in my hand. Therefore, having moved too far from my prior university neuro, I found a new neuromuscular specialist in my area and made an appointment with them. From my perspective, I assumed that I had potentially developed carpel tunnel syndrome. Along with that, the frequency of my fasciculations increased dramatically, but I attributed that to stress/dealing with my hand pain.
Today was my appointment. The Neuro performed their clinical, and everything was normal (in the limbs), except for my tongue. Neuro flat out said "You have weakness in your tongue". Neuro stated this while creating resistance / pushing against my tongue with my mouth closed, which she stated was 'clinically weak'. Immediately, I became a little concerned. I made a point to mention my prior surgery, but the neuro seemingly was unmoved by that context.
After the clinical exam, the neuro offers to perform a same day EMG. (Note: the offer was due to appointment cancellations, as they had 1-2 EMGs scheduled after me that cancelled - so super fortunate on my part it seemed).
So the EMG is performed, and it's essentially normal, with the exception of fasciculations seen in the calf. Areas tested were one hand, same arm, neck, back and one leg. Neuro did not test tongue or 'bulbar region'. Afterwards, I asked for their thoughts and it basically went like this (paraphrasing):
Neuro: Test went well, everything was very quiet, and only noticed some rare fasciculations
Me: That's good, right?
Neuro: Yes, I'd still like to do some genetic testing. There's neuromuscular stuff that can cause tongue weakness or sensory issues
**some back and fourth about carpel tunnel and the nerve study - which came back normal**
Me: Are you also testing for MND, should I be worried about ALS at all still?
Neuro: Well, anyone can develop anything, so it's hard to ever say, but I wouldn't worry about it in this moment
Me: That doesn't make me feel much better
Neuro: Oh don't worry, if you had ALS, I would have told you or seen it when you walked in, and I don't think you do right now
In conclusion, while I can appreciate the neuro saying she doesn't feel I have MND (which I'm thankful for), her phrasing felt odd and a bit calculated, sort of suggesting 'not right now' or 'in this moment' twice. It just didn't feel like a firm answer, which is the opposite of what I experienced over the last decade if the topic of MND came up. The entire conversation left me feeling a bit confused. Finally, the tongue weakness comment/analysis surprised me, both because A). I haven't really had any slurring or choking on foods - maybe some hoarseness, but thought it was allergies/the cold....and B). While the neuro seemed concerned by it during the clinical exam, she didn't seemingly test for it during the needle portion. Therefore, I'm just looking for some perspective on the following 2 questions:
1. Would tongue/bulbar weakness show up on limb EMG study/findings?
2. Do you feel I'm over-thinking the conversation? I would imagine the statistical probability of me showing MND weakness after 10 years to be quite low?