Kiki123
New member
- Joined
- Dec 20, 2020
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- GE
- State
- IN
- City
- Berlin
Dear lovely Community,
Unfortunately my old thread is closed. I've been lurking around for a while. My symptoms unfortunately progressed, more cramping, stiffness and clonus of jaw + hyperreflexie.
I had mrt, spinal tap and bloodwork, video endoscopy done as well as an emg in December which showed nothing back then.
Now my ENT confirmed via endoscopy that my vocal cords and larynx are partly paralyzed and slightly atrophied which explains my swallowing issues and hoarseness.
I will see another neuro soon. Idk how to behave now.
1.Should I ask him to emg the bulbar muscles as this hadn't been done in December.
2.Is anyone aware of neurofilament light chain test? Would that be applicable?
3. Should I ask for genetic testing since FTD runs in my family?
I'm sorry for posting here again and requesting your advice although since sth is definitely wrong and some of my symptoms match ALS I am very concerned.
Thank you ever so much in advance for your support. It's so great that you help people with anxiety, pals and cals on this forum.
I pray that a cure or at least better treatment will be found soon.
Best wishes
Kiki
Unfortunately my old thread is closed. I've been lurking around for a while. My symptoms unfortunately progressed, more cramping, stiffness and clonus of jaw + hyperreflexie.
I had mrt, spinal tap and bloodwork, video endoscopy done as well as an emg in December which showed nothing back then.
Now my ENT confirmed via endoscopy that my vocal cords and larynx are partly paralyzed and slightly atrophied which explains my swallowing issues and hoarseness.
I will see another neuro soon. Idk how to behave now.
1.Should I ask him to emg the bulbar muscles as this hadn't been done in December.
2.Is anyone aware of neurofilament light chain test? Would that be applicable?
3. Should I ask for genetic testing since FTD runs in my family?
I'm sorry for posting here again and requesting your advice although since sth is definitely wrong and some of my symptoms match ALS I am very concerned.
Thank you ever so much in advance for your support. It's so great that you help people with anxiety, pals and cals on this forum.
I pray that a cure or at least better treatment will be found soon.
Best wishes
Kiki