- Joined
- May 5, 2023
- Messages
- 10
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
I went to a neurologist this morning (Same one I've been seeing for the past 2 months or so). He still seemed reluctant to order an EMG. He said he didn't want me to get stressed out over some incidental findings which might be unrelated to any serious pathology...
He told me about a time when he got an EMG in med school and they apparently found some pinched nerve and some neuropathy, but he apparently got stressed at the time, though it probably wasn't anything serious. He didn't want me going through the same thing apparently.
He tested my reflexes, did a very basic gait test (tandem gait, walking on toes, walking on heels, etc.), and then asked me to push up against his hand, tested leg extension strength, etc.
This time I wrote down all my concerns:
1. Strained breathing (shuddering when I exhale and "out-of-sync" chest and abdomen)
2. Some trouble swallowing (aspirated on food a few times)
3. Fiery pain in my legs and arms which get worse upon exertion. When I sit or walk for long periods of time, my legs start to burn like an MF (not muscle pain); The pain was so bad in my left foot I had to stop driving and ask my dad to take over. Right leg wasn't much better.
4. Twitches whenever I lie on my back, with random arm contractions
5. Wobbly feeling when I stand on my legs
His statements in the order in which he addressed my concerns:
1. #1-2: Apparently breathing issues and swallowing issues show up concurrently or after severe speech issues in Bulbar ALS? He said my speech sounded fine, which is why he didn't suspect anything serious w/ those two symptoms. Also he said that things like tightness when swallowing and difficulties on that front are a very common problem in the population. My friend told me my voice sounds a bit nasally though...but he was the only friend who noticed anything off about my voice...
2. #3: He told me #3 was mostly anxiety and stress related in his opinion...which I'm not sure about given that there were a bunch of MRI findings which we initially hadn't discussed:
1. Kyphotic C-Spine
2. 6 bulging discs (not 5 as thought earlier )
3. Mild Cervical Canal Narrowing
3.#4: The discussion got kind of technical here and I honestly don't understand it. He mentioned something about ALS patients having twitches in specific muscle fibers and that the twitches get "activated" in a particular manner which didn't seem consistent with his clinical exam of me. TL;DR the twitching I've been having don't seem to lineup with what his experience is w/ the ALS patients he's seen.
4. #5: He said he didn't notice any wobbliness in the gait test he performed, and that wobbliness would've resulted in something akin to a "Trendelenberg" gait (or something of that sort).
I asked him about UMN signs. I talked to him about the vibrating in my legs when I lifted some heavy weights and asked if I had clonus, he mentioned I had 2-3 beats of clonus when he checked, and that it wasn't anything abnormal to be concerned about...Apparently the reflexes were normal. He checked patellar, ankle, bicep, and tricep reflexes.
I don't know how all these symptoms could just be linked to "anxiety..."
Perhaps I need to get a 2nd Opinion...
The reason I wonder this is because, if this neurologist just says "yep, that's all anxiety" over some severe nerve pain and issues...can I really trust his judgement on ALS?
He told me about a time when he got an EMG in med school and they apparently found some pinched nerve and some neuropathy, but he apparently got stressed at the time, though it probably wasn't anything serious. He didn't want me going through the same thing apparently.
He tested my reflexes, did a very basic gait test (tandem gait, walking on toes, walking on heels, etc.), and then asked me to push up against his hand, tested leg extension strength, etc.
This time I wrote down all my concerns:
1. Strained breathing (shuddering when I exhale and "out-of-sync" chest and abdomen)
2. Some trouble swallowing (aspirated on food a few times)
3. Fiery pain in my legs and arms which get worse upon exertion. When I sit or walk for long periods of time, my legs start to burn like an MF (not muscle pain); The pain was so bad in my left foot I had to stop driving and ask my dad to take over. Right leg wasn't much better.
4. Twitches whenever I lie on my back, with random arm contractions
5. Wobbly feeling when I stand on my legs
His statements in the order in which he addressed my concerns:
1. #1-2: Apparently breathing issues and swallowing issues show up concurrently or after severe speech issues in Bulbar ALS? He said my speech sounded fine, which is why he didn't suspect anything serious w/ those two symptoms. Also he said that things like tightness when swallowing and difficulties on that front are a very common problem in the population. My friend told me my voice sounds a bit nasally though...but he was the only friend who noticed anything off about my voice...
2. #3: He told me #3 was mostly anxiety and stress related in his opinion...which I'm not sure about given that there were a bunch of MRI findings which we initially hadn't discussed:
1. Kyphotic C-Spine
2. 6 bulging discs (not 5 as thought earlier )
3. Mild Cervical Canal Narrowing
3.#4: The discussion got kind of technical here and I honestly don't understand it. He mentioned something about ALS patients having twitches in specific muscle fibers and that the twitches get "activated" in a particular manner which didn't seem consistent with his clinical exam of me. TL;DR the twitching I've been having don't seem to lineup with what his experience is w/ the ALS patients he's seen.
4. #5: He said he didn't notice any wobbliness in the gait test he performed, and that wobbliness would've resulted in something akin to a "Trendelenberg" gait (or something of that sort).
I asked him about UMN signs. I talked to him about the vibrating in my legs when I lifted some heavy weights and asked if I had clonus, he mentioned I had 2-3 beats of clonus when he checked, and that it wasn't anything abnormal to be concerned about...Apparently the reflexes were normal. He checked patellar, ankle, bicep, and tricep reflexes.
I don't know how all these symptoms could just be linked to "anxiety..."
Perhaps I need to get a 2nd Opinion...
The reason I wonder this is because, if this neurologist just says "yep, that's all anxiety" over some severe nerve pain and issues...can I really trust his judgement on ALS?
Last edited:
