- Joined
- Mar 9, 2023
- Messages
- 13
- Reason
- PALS
- Diagnosis
- 02/2023
- Country
- US
- State
- CA
- City
- Glendale
Hi, just found this forum last night and I am so relieved to be able to share this experience with people who understand, while we support one another.
I was diagnosed 2 1/2 weeks ago by a neurologist who has no doubts, though he's sending me for 2nd opinion which I'm working on getting at the ALS Clinic at USC (Los Angeles). He put me on Riluzole for now, just started it today.
I've been through the wringer since first noticing symptoms in Spring 2022. I pushed through them, and had a wonderful summer including baptisms, weddings, and a cross country driving trip with favorite sis-in-law. (So grateful for that summer.) An MRI in September showed a frontal meningioma that seemed to explain the symptoms, so in October I had a craniotomy to excise. Then, I just kept getting weaker, which led me to here.
I am so fortunate to have a wonderful family (husband and 2 adult kids that live nearby) and friends network. I have a 3yo granddaughter, love of my life. I cry so much, but hoping to channel that into acceptance or grace or something. Will I ever stop crying at the drop of a hat? So sad to be here, and so sorry that you all are here too.
I was diagnosed 2 1/2 weeks ago by a neurologist who has no doubts, though he's sending me for 2nd opinion which I'm working on getting at the ALS Clinic at USC (Los Angeles). He put me on Riluzole for now, just started it today.
I've been through the wringer since first noticing symptoms in Spring 2022. I pushed through them, and had a wonderful summer including baptisms, weddings, and a cross country driving trip with favorite sis-in-law. (So grateful for that summer.) An MRI in September showed a frontal meningioma that seemed to explain the symptoms, so in October I had a craniotomy to excise. Then, I just kept getting weaker, which led me to here.
I am so fortunate to have a wonderful family (husband and 2 adult kids that live nearby) and friends network. I have a 3yo granddaughter, love of my life. I cry so much, but hoping to channel that into acceptance or grace or something. Will I ever stop crying at the drop of a hat? So sad to be here, and so sorry that you all are here too.