KateMMA
Active member
- Joined
- Apr 30, 2019
- Messages
- 30
- Reason
- DX MND
- Diagnosis
- 02/2019
- Country
- US
- State
- CA
- City
- Oceanside
Hi everyone! I'm a 37 year old woman and I was recently diagnosed with ALS after a previous diagnosis of Hirayama's Disease. I have a second opinion scheduled for January 5th with the UCSD ALS Clinic.
I started having symptoms in January 2018 when I was pregnant with my first son. I couldn't disassemble my pistol (I was in the Navy at the time but I was in the Marine Corps before that and had been shooting pistols and rifles for 10 years and never had a problem before) but attributed my hand weakness to my pregnancy because there are so many strange symptoms when you're pregnant.
I had small issues with other things using my hands but thought it was because I was an exhausted new parent. I then noticed atrophy in my left hand in October 2018 and saw my doctor who referred me to OT who referred me to PT who referred me to Neuro who referred me to a neuromuscular specialist who diagnosed me with Hirayama's in February 2019 because it was isolated to my left hand and forearm.
Follow up EMG was July 2019 with no change and we were reassured it was Hirayama's. I got pregnant with my second son shorty after that. I was medically retired from the Navy in January 2020 because of the Hirayama's diagnosis.
Shortly after that, while I was pregnant, my symptoms started worsening in my left arm and I suspected they were starting in my right. My son was born in April 2020 and I had a follow up EMG in June 2020. We found out it had moved up into my left shoulder and right forearm and hand. My neuromuscular specialist said she had concern for ALS but since every other region came back clean, it was still Hirayama's.
We moved to Hawaii in September 2020 (my husband is still in the Marine Corps) and I had my first appointment with my new neurophysiologist and he did an EMG and found abnormal readings in my left leg. He says it's ALS and wants to start riluzole. He's eager to hear the second opinion from UCSD but he's sure it's ALS.
It's been a long and emotionally exhausting rollercoaster of a road. We thought we were in the clear and then it got worse but we were still holding onto a shred of hope that it was Hirayama's. It seems like that hope is lost now and we have some tough decisions to make.
I just hate that I'm going to be putting my husband and family through this and that my boys' childhood is going to be marred by doctors visits, medical equipment, hospice, etc.
Thanks for reading, I know I'll get a lot of information on this forum and I'd love to help others in any way if I can.
One question: Does anyone know if you can take riluzole if you're breastfeeding?
I started having symptoms in January 2018 when I was pregnant with my first son. I couldn't disassemble my pistol (I was in the Navy at the time but I was in the Marine Corps before that and had been shooting pistols and rifles for 10 years and never had a problem before) but attributed my hand weakness to my pregnancy because there are so many strange symptoms when you're pregnant.
I had small issues with other things using my hands but thought it was because I was an exhausted new parent. I then noticed atrophy in my left hand in October 2018 and saw my doctor who referred me to OT who referred me to PT who referred me to Neuro who referred me to a neuromuscular specialist who diagnosed me with Hirayama's in February 2019 because it was isolated to my left hand and forearm.
Follow up EMG was July 2019 with no change and we were reassured it was Hirayama's. I got pregnant with my second son shorty after that. I was medically retired from the Navy in January 2020 because of the Hirayama's diagnosis.
Shortly after that, while I was pregnant, my symptoms started worsening in my left arm and I suspected they were starting in my right. My son was born in April 2020 and I had a follow up EMG in June 2020. We found out it had moved up into my left shoulder and right forearm and hand. My neuromuscular specialist said she had concern for ALS but since every other region came back clean, it was still Hirayama's.
We moved to Hawaii in September 2020 (my husband is still in the Marine Corps) and I had my first appointment with my new neurophysiologist and he did an EMG and found abnormal readings in my left leg. He says it's ALS and wants to start riluzole. He's eager to hear the second opinion from UCSD but he's sure it's ALS.
It's been a long and emotionally exhausting rollercoaster of a road. We thought we were in the clear and then it got worse but we were still holding onto a shred of hope that it was Hirayama's. It seems like that hope is lost now and we have some tough decisions to make.
I just hate that I'm going to be putting my husband and family through this and that my boys' childhood is going to be marred by doctors visits, medical equipment, hospice, etc.
Thanks for reading, I know I'll get a lot of information on this forum and I'd love to help others in any way if I can.
One question: Does anyone know if you can take riluzole if you're breastfeeding?