Linnhj
New member
- Joined
- Jul 11, 2021
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- SE
Hi! Im 32 years old with an long and atypically story. Sorry for my English I’m not native speaking.
Jan -13 I started to have wide spread fasiculations all over my body. Left hand became a bit uncoordinated and felt week.
EMG summer -14 was clean. During the summer I developed a IV cranial nerve palsy and double vision. Neuro noted positive Hoffman left hand brisk reflexes lower extremity and a few beats of clonus bilateral. Lumbar puncture was clean apart from slightly elevated IgM antibodies and that the white cells where mostly lymfocytes. I also had 2 times of high ACE in serum. The plan was to repeat lumbar puncture to look for sarcoidosis.
Summer -15 I noticed slight atrophy of hypothenar muscles left hand and of lower arm. Did not go back because I felt better. My hand slowly began to work properly again even though you still can see the atrophy. I’ve also developed something like slight visual snow phenomena that I still have.
The years went by and I was totally fine until recent. For some time I’ve been having sensation loss under the feet bilateral that comes and goes, never more than 10-20 minutes. I had my second baby 9 weeks ago. I also had COVID 12 weeks ago. Last 3 weeks the fasiculations has come back. Not as frequent as last time but still there and mostly in places I feel weak. I feel I have no pressure under my left toes dig 2-4. It’s like I can’t activate the small muscles of the foot. (Bending the toes at the mtp joint is impossible on the left) I’m still strong in the calf muscles so I can walk on toes etc. My bum on the left leg is weak. I’m having trouble with one leged squats which I have been able to do before.
The symptoms in my left arm came back very suddenly 2 weeks ago. I feel uncoordinated again and it has become hard to lift the baby with left arm cause I feel weak under the scapula. I dont know for sure when these symptoms started they might have sneaked up on me but before pregnancy I was at the shape of my life, really strong. One weak ago my right leg went in to subcramping. My calf feels tensed all the time and my hamstrings most of the time. There’s also like my left hand function came from one moment to another.
2 days ago I saw Neuro again. He found brisk patellar reflexes normal Achilles. No clonus or babinski. Asymmetri in upper extremities with Hoffman positive on left, finger flexors positive and more brisk then on right. He saw atrophy in hand and maybe in infraspinatus. Didn’t notice any fasiculations. He didn’t note any face weakness or tounge fasiculations. The night after I woke up and my left lower face closes to the lips felt weak. Since then my tounge fasiculates and my lip most on the left upper side fasiculates. I have slight dysarthria and keeps biting the inside of my cheek. He also found slight numbness under feet and in finger tips.
Why are things progressing this quick?! Have any one experienced the same? I was fine for 8 years and now I sit here with my new baby feeling so devastated. Signs of both UMN and wasting can’t be that many other things . Neuro wants to repeat MRI,EMG and lumbar puncture but this will take forever to get done since it’s summer here. Have anyone experienced such rapid progression or that long plateau phase? Any one with trochlear palsy from early on?
Jan -13 I started to have wide spread fasiculations all over my body. Left hand became a bit uncoordinated and felt week.
EMG summer -14 was clean. During the summer I developed a IV cranial nerve palsy and double vision. Neuro noted positive Hoffman left hand brisk reflexes lower extremity and a few beats of clonus bilateral. Lumbar puncture was clean apart from slightly elevated IgM antibodies and that the white cells where mostly lymfocytes. I also had 2 times of high ACE in serum. The plan was to repeat lumbar puncture to look for sarcoidosis.
Summer -15 I noticed slight atrophy of hypothenar muscles left hand and of lower arm. Did not go back because I felt better. My hand slowly began to work properly again even though you still can see the atrophy. I’ve also developed something like slight visual snow phenomena that I still have.
The years went by and I was totally fine until recent. For some time I’ve been having sensation loss under the feet bilateral that comes and goes, never more than 10-20 minutes. I had my second baby 9 weeks ago. I also had COVID 12 weeks ago. Last 3 weeks the fasiculations has come back. Not as frequent as last time but still there and mostly in places I feel weak. I feel I have no pressure under my left toes dig 2-4. It’s like I can’t activate the small muscles of the foot. (Bending the toes at the mtp joint is impossible on the left) I’m still strong in the calf muscles so I can walk on toes etc. My bum on the left leg is weak. I’m having trouble with one leged squats which I have been able to do before.
The symptoms in my left arm came back very suddenly 2 weeks ago. I feel uncoordinated again and it has become hard to lift the baby with left arm cause I feel weak under the scapula. I dont know for sure when these symptoms started they might have sneaked up on me but before pregnancy I was at the shape of my life, really strong. One weak ago my right leg went in to subcramping. My calf feels tensed all the time and my hamstrings most of the time. There’s also like my left hand function came from one moment to another.
2 days ago I saw Neuro again. He found brisk patellar reflexes normal Achilles. No clonus or babinski. Asymmetri in upper extremities with Hoffman positive on left, finger flexors positive and more brisk then on right. He saw atrophy in hand and maybe in infraspinatus. Didn’t notice any fasiculations. He didn’t note any face weakness or tounge fasiculations. The night after I woke up and my left lower face closes to the lips felt weak. Since then my tounge fasiculates and my lip most on the left upper side fasiculates. I have slight dysarthria and keeps biting the inside of my cheek. He also found slight numbness under feet and in finger tips.
Why are things progressing this quick?! Have any one experienced the same? I was fine for 8 years and now I sit here with my new baby feeling so devastated. Signs of both UMN and wasting can’t be that many other things . Neuro wants to repeat MRI,EMG and lumbar puncture but this will take forever to get done since it’s summer here. Have anyone experienced such rapid progression or that long plateau phase? Any one with trochlear palsy from early on?
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