dbel
New member
- Joined
- Dec 2, 2021
- Messages
- 7
- Reason
- PALS
- Diagnosis
- 11/2021
- Country
- US
- State
- WA
- City
- Lake Tapps
I was blind sided and was diagnosed on 11/1/21 with ALS. It started in Fall of 2020 with what I thought was carpal tunnel. My symptoms seemed to improve with splints and rest. Then during July 2021, I started to notice right hand weakness, especially in my pincers. I was seen by a neurologist in August and all the test (MRI, blood work, EMG etc) were initiated. EMG was abnormal for my right hand. MRI returned normal. Blood work returned normal. I was started on riluzole.
I was prescribed three months of IVIG infusion on 11/29/21 as my GM1 antibodies were moderately elevated. However, I am not responding as my right hand and arm seems to be significantly weaker as well as the neurologist stressed that the IVIG infusion was more of a last ditch-effort. The neurologist who diagnosed me is an ALS specialist and I have started attending the ALS Clinic.
I am 52 years old with two sons ages 15 and 17 and a very supportive husband. My sons, my immediate family and my co-workers are aware of my diagnosis which was so hard for me to share. Each time I share my diagnosis, it feels that I am reliving the grieving process.
I am looking into either starting the radicava infusions once I complete my IVIG infusions in early February. My other option is participating in the oral radicava trials where I would be either receiving radicava orally on its current IV dosage schedule or receiving oral radicava on a more frequent dosage schedule than it is currently offered intravenously. I am wondering if anyone has any thoughts on radicava and the trials. Combat clinical trials are currently offered in my area and Amylyx and Healy Platform trials will be opening up in the next couple of months. I'm not just not sure which trial to participate in. I welcome anyone's thoughts/opinions.
I have started taking Tudca in hopes of starting my own Amylyx trials . I am so thankful for this forum which I have been perusing through on almost a daily basis since I was diagnosed. It gives me some hope that there is life after being diagnosed as well as that I am not alone on this journey. It has been quite the roller coaster and am trying to practice gratitude and staying present in the moment each day but it is a challenge, especially as I try to plan for the future (ie moving to a home with a master on the main, connecting with long term disabilities, SSI, etc). I appreciate everyone taking the time to read my post.
I was prescribed three months of IVIG infusion on 11/29/21 as my GM1 antibodies were moderately elevated. However, I am not responding as my right hand and arm seems to be significantly weaker as well as the neurologist stressed that the IVIG infusion was more of a last ditch-effort. The neurologist who diagnosed me is an ALS specialist and I have started attending the ALS Clinic.
I am 52 years old with two sons ages 15 and 17 and a very supportive husband. My sons, my immediate family and my co-workers are aware of my diagnosis which was so hard for me to share. Each time I share my diagnosis, it feels that I am reliving the grieving process.
I am looking into either starting the radicava infusions once I complete my IVIG infusions in early February. My other option is participating in the oral radicava trials where I would be either receiving radicava orally on its current IV dosage schedule or receiving oral radicava on a more frequent dosage schedule than it is currently offered intravenously. I am wondering if anyone has any thoughts on radicava and the trials. Combat clinical trials are currently offered in my area and Amylyx and Healy Platform trials will be opening up in the next couple of months. I'm not just not sure which trial to participate in. I welcome anyone's thoughts/opinions.
I have started taking Tudca in hopes of starting my own Amylyx trials . I am so thankful for this forum which I have been perusing through on almost a daily basis since I was diagnosed. It gives me some hope that there is life after being diagnosed as well as that I am not alone on this journey. It has been quite the roller coaster and am trying to practice gratitude and staying present in the moment each day but it is a challenge, especially as I try to plan for the future (ie moving to a home with a master on the main, connecting with long term disabilities, SSI, etc). I appreciate everyone taking the time to read my post.
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