Momofone
Member
- Joined
- Jul 10, 2015
- Messages
- 17
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- CA
- State
- ON
- City
- Toronto
Hi there,
Please bear with me - this may be a longer post and I am awake at night and very scared.
I’m a 41 y/o mom of 2 young children, carrier of c9orf72 and have been experiencing some symptoms. My family has been devastated by this disease; we’ve lost so many people, though none in my generation yet.
A week ago I woke to sudden pain in my back after moving my arm while sleeping, and since then things have progressed. I had extreme pain the following two days in my back, arm and shoulder, which I understand is not a symptom of ALS. I saw my doctor, who ran an exam on me, told me she thought it was muscular, prescribed me some over the counter back pain meds, gave me a treatment plan, and sent me on my way. She told me to come back if anything gets worse or changes.
My arm, back and spot beside my breast close to my armpit all start with fasciculations day 4. I’ve had benign fasciculations for 15 or so years now (since my mom passed), so I just try my best to ignore them.
3 days after the initial pain, I am cutting cheese for my husbands sandwich and I could not get the knife to connect with the cutting board. My arm couldn’t do it! My left arm had to assist the blade. This sets off major alarm bells in my mind.
5 days after initial pain we go to the gym as a family to play basketball, and I try to bounce a ball but it’s not coming back up to me when I dribble like it normally does, so thought it was lacking air and I get another ball. It does the same thing, as does a 3rd ball. I realize it’s likely me - alarm bells again, and try shooting 2 balls, and give up to sit out because there’s no power behind my throw.
I’m really realistic when it comes to my anxiety with this disease. It has taken over my mind at times, and I know it can create symptoms.
I know these two situations aren’t anything super alarming. The cheese felt like failing to me. The ball thing could be in my head. They both could be due to the injury, but my mind can’t shake the thought of ALS and it’s waking me up at night with worry.
I’ll book back in with my doctor on Monday and see if she wants me to go to my neurologist or not. She’ll likely do a quick Neuro exam on me to see if there is any weakness or if it’s perceived.
I just needed to get this out there. I can’t talk to my husband about it. He has heard my on and off worries for the last ten years and I know it bothers him, like I’m crying wolf.
My dad said it could be something as simple as a pinched nerve and I know he’s right - it definitely could be. I’m just trying to get through to Monday to see my doctor.
Thanks for reading. Any input would be so appreciated.
Please bear with me - this may be a longer post and I am awake at night and very scared.
I’m a 41 y/o mom of 2 young children, carrier of c9orf72 and have been experiencing some symptoms. My family has been devastated by this disease; we’ve lost so many people, though none in my generation yet.
A week ago I woke to sudden pain in my back after moving my arm while sleeping, and since then things have progressed. I had extreme pain the following two days in my back, arm and shoulder, which I understand is not a symptom of ALS. I saw my doctor, who ran an exam on me, told me she thought it was muscular, prescribed me some over the counter back pain meds, gave me a treatment plan, and sent me on my way. She told me to come back if anything gets worse or changes.
My arm, back and spot beside my breast close to my armpit all start with fasciculations day 4. I’ve had benign fasciculations for 15 or so years now (since my mom passed), so I just try my best to ignore them.
3 days after the initial pain, I am cutting cheese for my husbands sandwich and I could not get the knife to connect with the cutting board. My arm couldn’t do it! My left arm had to assist the blade. This sets off major alarm bells in my mind.
5 days after initial pain we go to the gym as a family to play basketball, and I try to bounce a ball but it’s not coming back up to me when I dribble like it normally does, so thought it was lacking air and I get another ball. It does the same thing, as does a 3rd ball. I realize it’s likely me - alarm bells again, and try shooting 2 balls, and give up to sit out because there’s no power behind my throw.
I’m really realistic when it comes to my anxiety with this disease. It has taken over my mind at times, and I know it can create symptoms.
I know these two situations aren’t anything super alarming. The cheese felt like failing to me. The ball thing could be in my head. They both could be due to the injury, but my mind can’t shake the thought of ALS and it’s waking me up at night with worry.
I’ll book back in with my doctor on Monday and see if she wants me to go to my neurologist or not. She’ll likely do a quick Neuro exam on me to see if there is any weakness or if it’s perceived.
I just needed to get this out there. I can’t talk to my husband about it. He has heard my on and off worries for the last ten years and I know it bothers him, like I’m crying wolf.
My dad said it could be something as simple as a pinched nerve and I know he’s right - it definitely could be. I’m just trying to get through to Monday to see my doctor.
Thanks for reading. Any input would be so appreciated.
