dodo89
New member
- Joined
- Dec 12, 2022
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- HU
Hello Everyone,
thank you for reading this in advance. I’ll try to keep it as short as possible, and give a timeline of my prolems. Please read till the end, don’t just stop because it starts out as typical.
- 33 year old female
- Last June, I started waking up with numb (pins and needles) hands every night. This went away a few months later
- Last August, I started to have twitching on the outside of my right wrist. It used to happen at rest when I was lying in my bed, trying to sleep.
- This led me to examining my hands, as a result of which I discovered several dents on my hands. My hands look a lot less muscular, “full” than family members' hands I took a look at to compare.
- In September, I first noticed that my hands, especially the left, grow tired and sort of hurt from basically everything: writing a few lines of text, stirring something thick while cooking, holding the mop strongly, etc.
- Two hand surgeons confirmed that I have some atrophy in my left thenar (and I’m left-handed) but were unable to suggest anything useful to do about it. Pincer grasp is a bit weaker than in right as well.
- I was examined by 4 neurologists (there are no neuro-muscular specialists where I live), and my clinicals were all clear as well as the two EMGs they performed (these were quite short. Due to my age and clean clinicals, the neurologists did not take me very seriously anyway.)
- Clean MRI of neck and spine
- Clean autoimmune bloodwork at rheumatologist. She thinks problems come from spastic neck and trapezius muscles.
- Since September, I’ve been having cramp-like pains in my calves.
- The twitching disappeared for a while, but returned again. There are two consistent locations: outside of right wrist again, but now I have it after using it more intensely for a little while; and left cheek after chewing. Sometimes left thenar muscle, even more rarely other locations.
- Waking up with pins and needles happens again every night, but often in left hand, now. I know it’s not supposed to be an ALS symptom, I’ve discovered several threads where PALS admit to having this symptom of waking up with numb hands. This made me even more desperate.
I’m really freaked out about the confirmed atrophy and weakness and the localized twitching, too. Neurologists tell me to get on with my life, but how am I supposed to do that??
I’m so, so sorry for taking up your time, but…living like this, constantly in fear…is no life at all. Please help me if you can. What should I do? I am terrified this is the beginning of something terminal, like ALS.
Thank you for any advice you can give me in advance,
Dora
thank you for reading this in advance. I’ll try to keep it as short as possible, and give a timeline of my prolems. Please read till the end, don’t just stop because it starts out as typical.
- 33 year old female
- Last June, I started waking up with numb (pins and needles) hands every night. This went away a few months later
- Last August, I started to have twitching on the outside of my right wrist. It used to happen at rest when I was lying in my bed, trying to sleep.
- This led me to examining my hands, as a result of which I discovered several dents on my hands. My hands look a lot less muscular, “full” than family members' hands I took a look at to compare.
- In September, I first noticed that my hands, especially the left, grow tired and sort of hurt from basically everything: writing a few lines of text, stirring something thick while cooking, holding the mop strongly, etc.
- Two hand surgeons confirmed that I have some atrophy in my left thenar (and I’m left-handed) but were unable to suggest anything useful to do about it. Pincer grasp is a bit weaker than in right as well.
- I was examined by 4 neurologists (there are no neuro-muscular specialists where I live), and my clinicals were all clear as well as the two EMGs they performed (these were quite short. Due to my age and clean clinicals, the neurologists did not take me very seriously anyway.)
- Clean MRI of neck and spine
- Clean autoimmune bloodwork at rheumatologist. She thinks problems come from spastic neck and trapezius muscles.
- Since September, I’ve been having cramp-like pains in my calves.
- The twitching disappeared for a while, but returned again. There are two consistent locations: outside of right wrist again, but now I have it after using it more intensely for a little while; and left cheek after chewing. Sometimes left thenar muscle, even more rarely other locations.
- Waking up with pins and needles happens again every night, but often in left hand, now. I know it’s not supposed to be an ALS symptom, I’ve discovered several threads where PALS admit to having this symptom of waking up with numb hands. This made me even more desperate.
I’m really freaked out about the confirmed atrophy and weakness and the localized twitching, too. Neurologists tell me to get on with my life, but how am I supposed to do that??
I’m so, so sorry for taking up your time, but…living like this, constantly in fear…is no life at all. Please help me if you can. What should I do? I am terrified this is the beginning of something terminal, like ALS.
Thank you for any advice you can give me in advance,
Dora
