jayhawkwilliams
New member
- Joined
- Jun 29, 2021
- Messages
- 6
- Reason
- CALS
- Diagnosis
- 00/0000
- Country
- US
- State
- KS
This is my first time posting about some concerning symptoms I am having. I will state that my father was diagnosed with ALS in Jan of 2019 at age 70. We originally thought his diagnosis was sporadic. We now have another family member, my father's niece, aged 63, who will most likely be diagnosed with ALS on the 23rd of August. They have ruled out everything else, almost.
I am the 51 year old daughter. I was diagnosed in January of 2020 with benign fasciculation syndrome at the same ALS clinic that diagnosed my father. I returned to the clinic just two weeks ago, but was given a clean clinical. I was again told it was benign fasciculation syndrome and symptoms were most likely increasing due to anxiety. There was no additional testing or imaging requested.
My current symptoms are all on my right side:
Fourth toe on right foot lies sideways and is very weak - neurologist noted this but said she was unsure what was causing it, possibly sciatica issues
When I spread toes on my right foot, they stay spread out for about 10 seconds, then the 2nd, 3rd and 4th toes collapse down
I have a raised arch on my right foot and I am walking on the outside of the foot
I have constant cramping and light fasciculations in my right leg (cramping only in calf)
I have constant spasms or muscle twitches in my right glute
I have constant spasms or muscle twitches in my right side of my mid and lower back
I have light fasciculations in my right arm - occasional muscle spasms - and this arm feels weak, but no clinical weakness was observed at my neurologist visit
I have had constant twitching around the mouth area - right side - and a few instances of chin twitching - since June of 2020
I have tongue twitching and tremors for the past month - tongue twitching occurs at rest in mouth too
Right arm has major fasciculations all over after too much exertion
My esophagus often feels like it is twitching internally
Cannot whistle as strongly as before
My body often feels like it is "trembling" internally all over
Twitching in the thenar region of right hand
thumb twitching /movement occasionally
I have been completing physical therapy as my PCP thought the glute issues could be sciatica. Nothing has improved after 5 weeks of PT.
I am happy that the neurologist provided me with a clean clinical, but she will see me again in 6 months. I am still worried.
Does this sound at all like ALS? Would the twitching be not so widespread if it were indeed an ALS onset?
I am the 51 year old daughter. I was diagnosed in January of 2020 with benign fasciculation syndrome at the same ALS clinic that diagnosed my father. I returned to the clinic just two weeks ago, but was given a clean clinical. I was again told it was benign fasciculation syndrome and symptoms were most likely increasing due to anxiety. There was no additional testing or imaging requested.
My current symptoms are all on my right side:
Fourth toe on right foot lies sideways and is very weak - neurologist noted this but said she was unsure what was causing it, possibly sciatica issues
When I spread toes on my right foot, they stay spread out for about 10 seconds, then the 2nd, 3rd and 4th toes collapse down
I have a raised arch on my right foot and I am walking on the outside of the foot
I have constant cramping and light fasciculations in my right leg (cramping only in calf)
I have constant spasms or muscle twitches in my right glute
I have constant spasms or muscle twitches in my right side of my mid and lower back
I have light fasciculations in my right arm - occasional muscle spasms - and this arm feels weak, but no clinical weakness was observed at my neurologist visit
I have had constant twitching around the mouth area - right side - and a few instances of chin twitching - since June of 2020
I have tongue twitching and tremors for the past month - tongue twitching occurs at rest in mouth too
Right arm has major fasciculations all over after too much exertion
My esophagus often feels like it is twitching internally
Cannot whistle as strongly as before
My body often feels like it is "trembling" internally all over
Twitching in the thenar region of right hand
thumb twitching /movement occasionally
I have been completing physical therapy as my PCP thought the glute issues could be sciatica. Nothing has improved after 5 weeks of PT.
I am happy that the neurologist provided me with a clean clinical, but she will see me again in 6 months. I am still worried.
Does this sound at all like ALS? Would the twitching be not so widespread if it were indeed an ALS onset?