Second Opinion
Active member
- Joined
- May 1, 2022
- Messages
- 34
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- Syracuse
Firstly, I tried to continue my previous thread, but unfortunately, it stated it had closed, and was not open for further discussion.
I was also not sure of the appropriate forum, for this post.
After a year of pure craziness, I was finally given a diagnosis, but I am completely confused.
My appointment at the ALS clinic was extremely long and overwhelming- seeing a multitude of therapists, doctors, and social workers.
At the end of my appointment, I was exhausted and emotionally spent; therefore I regretfully did not ask my doctor to calrify or elaborate, and I am not due back to the clinc, until June.
Per my doctors notes;
Assessment and Plan: Pseudobulbar Palsy Pseudobulbar Affect 47 F presents with dysarthria, dysphagia, tongue weakness and emotional lability. Pseudobulbar Affect, with frequency of crying episodes reported to be daily and lasting up to 2 hours at a time several times throughout the day. Symptoms suggest Pseudobulbar Palsy and further monitoring for development of signs and symptoms of motor neuron disease is recommended. We carefully reviewed extensive testing and evaluation by several neuromuscular specialists in the past year. Leslie was seen by genetic counselor Allayna Frank. We agreed on the following: Tests ordered during clinic visit: - Referral to outpatient speech therapy at Crouse - Genetic testing for C9ORF72 and Invitae panel to consider - Please see your PCP for ECG
Is Psuedobulbar Palsy a variant of ALS, as my care will now be switched to the clinc under Dr. Young?
Is the diagnosis based on the normal EMGs thus far, hence the 'monitoring for MND'?
I have other symptoms such a slight balance concerns, cramping in arms after light activties, and clonus. Was not sure if these were also part of this?
Thank you, Leslie
I was also not sure of the appropriate forum, for this post.
After a year of pure craziness, I was finally given a diagnosis, but I am completely confused.
My appointment at the ALS clinic was extremely long and overwhelming- seeing a multitude of therapists, doctors, and social workers.
At the end of my appointment, I was exhausted and emotionally spent; therefore I regretfully did not ask my doctor to calrify or elaborate, and I am not due back to the clinc, until June.
Per my doctors notes;
Assessment and Plan: Pseudobulbar Palsy Pseudobulbar Affect 47 F presents with dysarthria, dysphagia, tongue weakness and emotional lability. Pseudobulbar Affect, with frequency of crying episodes reported to be daily and lasting up to 2 hours at a time several times throughout the day. Symptoms suggest Pseudobulbar Palsy and further monitoring for development of signs and symptoms of motor neuron disease is recommended. We carefully reviewed extensive testing and evaluation by several neuromuscular specialists in the past year. Leslie was seen by genetic counselor Allayna Frank. We agreed on the following: Tests ordered during clinic visit: - Referral to outpatient speech therapy at Crouse - Genetic testing for C9ORF72 and Invitae panel to consider - Please see your PCP for ECG
Is Psuedobulbar Palsy a variant of ALS, as my care will now be switched to the clinc under Dr. Young?
Is the diagnosis based on the normal EMGs thus far, hence the 'monitoring for MND'?
I have other symptoms such a slight balance concerns, cramping in arms after light activties, and clonus. Was not sure if these were also part of this?
Thank you, Leslie
