whoviantrekwarsgirl
New member
- Joined
- Apr 15, 2018
- Messages
- 3
- Reason
- Lost a loved one
- Country
- UK
- State
- Lancashire
- City
- Bolton
Let me start by saying I really hope you all tell me it's all in my head. I've read the sticky thread but I'm still unsure, so please bear with me while I ask for experienced opinions.
A little background.
A couple years before I was born (I'm 34 now), my paternal Grandmother and uncle (her son) both passed away from ALS. He was 25 when diagnosed and died at 26. She was in her late 40's and survived 4 years after diagnosis (so I'm told). Fast forward 21 years and my father was diagnosed at 46, and passed 8 months later at 47. Due to family history, he had genetic testing and was confirmed to have the SOD1 mutation.
I've had the possibility stuck in the back of my mind for 12 years, and always got scared any time I tripped or twitched, but was usually able to brush it off as the symptoms never lasted.
This time is different. My symptoms aren't going away. If not for the family history of the disease I probably wouldn't even think twice about it, and after reading several threads I'm still not entirely convinced. However, I'm absolutely petrified to go to the Dr at this point, so I thought I would ask you lovely, brave, amazing people for your opinions on my current symptoms.
A few months ago I noticed my thumb twitching rather severely. I brushed it off as it came and went. I started having more frequent muscle twitching in my arms and stomach shortly afterward. A couple of months ago I started to feel like my arms are constantly trembling, like I'm shaking from inside. This has now moved to my hands and I have a slight visible constant shaking in my hands now, but mostly only noticible when I'm holding my phone/tablet/book/etc. In the last couple of weeks, I've noted that my hands start to cramp up if holding something for more than a couple minutes, and my upper arms would feel very fatigued and start to ache, but the pain/cramping would diminish when I set the object down. However, in the last couple of days the cramping and fatigue is nearly constant and I find it difficult to fully open my hand for more than a few seconds before having to let it relax and fingers curl up slightly. Now I'm getting some twitching and cramping in my legs, and light cramping and numbness (well, not numb so much as no feeling at all) in my left foot. Add to all of this stomach problems I've been having for several months, where I feel nauseated almost every night (among other things), which is getting worse. Dr Google suggests my stomach symptoms to possibly be gastroparesis (weak stomach), but I'll take that with a grain of salt. I'm physically exhausted all of the time and feel like I'm getting out of breath doing things that never used to phase me. I struggle to pull myself off the sofa after sitting a while and in the morning I'm so stiff and achy it's slow going getting out of bed. Ive struggled to sleep the last few nights because of the cramping, twitching and aching. Something's wrong. I don't think I explained everything well enough, anyway. It's very hard to describe exactly what I'm experiencing.
I watched my father quickly deteriorate, but I was still quite young and couldn't handle watching him die, so I don't really know what exactly he felt as the disease progressed. He didn't talk and I didn't ask. I only know what I saw. He never completely lost the ability to speak, walk or use his hands before he died from respiratory failure, but his hands trembled badly and he had to use a walker. He whispered in the end but only because he could barely breathe. My regrettable ignorance is part of what has me confused over my own symptoms.
Thanks for your time. <3
A little background.
A couple years before I was born (I'm 34 now), my paternal Grandmother and uncle (her son) both passed away from ALS. He was 25 when diagnosed and died at 26. She was in her late 40's and survived 4 years after diagnosis (so I'm told). Fast forward 21 years and my father was diagnosed at 46, and passed 8 months later at 47. Due to family history, he had genetic testing and was confirmed to have the SOD1 mutation.
I've had the possibility stuck in the back of my mind for 12 years, and always got scared any time I tripped or twitched, but was usually able to brush it off as the symptoms never lasted.
This time is different. My symptoms aren't going away. If not for the family history of the disease I probably wouldn't even think twice about it, and after reading several threads I'm still not entirely convinced. However, I'm absolutely petrified to go to the Dr at this point, so I thought I would ask you lovely, brave, amazing people for your opinions on my current symptoms.
A few months ago I noticed my thumb twitching rather severely. I brushed it off as it came and went. I started having more frequent muscle twitching in my arms and stomach shortly afterward. A couple of months ago I started to feel like my arms are constantly trembling, like I'm shaking from inside. This has now moved to my hands and I have a slight visible constant shaking in my hands now, but mostly only noticible when I'm holding my phone/tablet/book/etc. In the last couple of weeks, I've noted that my hands start to cramp up if holding something for more than a couple minutes, and my upper arms would feel very fatigued and start to ache, but the pain/cramping would diminish when I set the object down. However, in the last couple of days the cramping and fatigue is nearly constant and I find it difficult to fully open my hand for more than a few seconds before having to let it relax and fingers curl up slightly. Now I'm getting some twitching and cramping in my legs, and light cramping and numbness (well, not numb so much as no feeling at all) in my left foot. Add to all of this stomach problems I've been having for several months, where I feel nauseated almost every night (among other things), which is getting worse. Dr Google suggests my stomach symptoms to possibly be gastroparesis (weak stomach), but I'll take that with a grain of salt. I'm physically exhausted all of the time and feel like I'm getting out of breath doing things that never used to phase me. I struggle to pull myself off the sofa after sitting a while and in the morning I'm so stiff and achy it's slow going getting out of bed. Ive struggled to sleep the last few nights because of the cramping, twitching and aching. Something's wrong. I don't think I explained everything well enough, anyway. It's very hard to describe exactly what I'm experiencing.
I watched my father quickly deteriorate, but I was still quite young and couldn't handle watching him die, so I don't really know what exactly he felt as the disease progressed. He didn't talk and I didn't ask. I only know what I saw. He never completely lost the ability to speak, walk or use his hands before he died from respiratory failure, but his hands trembled badly and he had to use a walker. He whispered in the end but only because he could barely breathe. My regrettable ignorance is part of what has me confused over my own symptoms.
Thanks for your time. <3
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