McBee
New member
- Joined
- Aug 22, 2021
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
- City
- Chicago
I am a 50-year-old female, and have been reading information on this site through most of 2021. I would really appreciate any insights.
As with so many I've seen on these and other forums, my concerns began with muscle twitching. After six months on a plan towards personal health improvement and intentional weight loss (~25 pounds) I noticed a few small twitches in my lower right abdomen in early October 2020.
Almost two months later following a very stressful time (was under observation for pancreatic cancer and was cleared), I noticed a twitch in my lower left thigh. Note that the original twitching began when I was not particularly stressed (other than the “normal” stress of 2020 and a loved one perishing to Covid). I went to my Nurse Practitioner who said this was out of her area of expertise and recommended a neurology appointment.
Following a visit in December 2020 where I had a normal clinical examination, I had an NCS/EMG performed in January 2021 with normal findings. This gave me relief but other symptoms then began – body-wide fasciculations, lip/jaw shaking, cramping/burning in the spot where the twitching began, a left hand tremor, myoclonic jerks when "at rest" during the day, jaw clench when falling asleep, difficulty standing in place, and noticeable tremors in legs when crossed. This went on for several months, and much of it has subsided. I also had every blood test imaginable, and an MRI, all with normal findings.
Some months ago, I began to have feelings of weakness in my arms, especially when going to sleep and upon waking, sometimes so much so that I only got relief from a heating pad. The weakness/heaviness would alternate between my upper arms and forearms. Again, this has largely subsided (but returns now and then), but I am wondering if it is due to my stopping any activity that might tax my arms (e.g. hand weights). I’m generally “taking it easy” except for walking for exercise.
Over the past 10+ months, I have seen five neurologists, including the Medical Directors at the ALS Clinics at University of Chicago and another ALS-Association-Affiliated Clinic. I have been diagnosed with Benign Fasciculation Syndrome, suspected hypermobility, and essential tremor. I recently had a 6-month follow-up NCS/EMG, with normal findings.
Current situation: my left-hand tremor is fairly consistent, and my thumbs on both hands tremor largely with normal tasks such as typing, food preparation, and driving. My hands appear very bony (concerns about intrinsic atrophy) and my wrists smaller. I have some difficulty manipulating my phone and other small tasks. My movements – especially those of my arms – have been “slow” for some time. After being “twitch-free” for many months, a hot spot returned in my calf, where the twitching is now different – it’s not quick and quite visible, but a more subtle, constant twitch that looks like the muscle is pulsing or “breathing.” My legs get very tired when standing after only a short time. I do not have balance or walking issues, but I must almost “concentrate” when I’m standing for any length of time – even at my counter at home. I also have visible dents in my right leg near the ankle and under the knee, where the twitching returned.
I have been in therapy for anxiety for several months. I have gained back 10 of the 25 pounds I lost. I am hesitant to be in situations where I need to stand for periods of time for fear that my legs will give out.
You hear about cases of clean EMGs in early disease. I understand that fasciculations are LMN, which should show up on EMG (fascics have not been recorded on any of my EMGs). In appointments, I do not show any clinical signs of disease beyond conditions listed above (negative for Babinski and Hoffman’s, normal strength, normal reflexes, etc.). Yet I experience my arms and legs as having weakness. I feel like something is being missed. I want to be reassured by the EMGs, but I don’t know what to make of the lingering symptoms – can weakness and clean EMGs co-exist in ALS?
As with so many I've seen on these and other forums, my concerns began with muscle twitching. After six months on a plan towards personal health improvement and intentional weight loss (~25 pounds) I noticed a few small twitches in my lower right abdomen in early October 2020.
Almost two months later following a very stressful time (was under observation for pancreatic cancer and was cleared), I noticed a twitch in my lower left thigh. Note that the original twitching began when I was not particularly stressed (other than the “normal” stress of 2020 and a loved one perishing to Covid). I went to my Nurse Practitioner who said this was out of her area of expertise and recommended a neurology appointment.
Following a visit in December 2020 where I had a normal clinical examination, I had an NCS/EMG performed in January 2021 with normal findings. This gave me relief but other symptoms then began – body-wide fasciculations, lip/jaw shaking, cramping/burning in the spot where the twitching began, a left hand tremor, myoclonic jerks when "at rest" during the day, jaw clench when falling asleep, difficulty standing in place, and noticeable tremors in legs when crossed. This went on for several months, and much of it has subsided. I also had every blood test imaginable, and an MRI, all with normal findings.
Some months ago, I began to have feelings of weakness in my arms, especially when going to sleep and upon waking, sometimes so much so that I only got relief from a heating pad. The weakness/heaviness would alternate between my upper arms and forearms. Again, this has largely subsided (but returns now and then), but I am wondering if it is due to my stopping any activity that might tax my arms (e.g. hand weights). I’m generally “taking it easy” except for walking for exercise.
Over the past 10+ months, I have seen five neurologists, including the Medical Directors at the ALS Clinics at University of Chicago and another ALS-Association-Affiliated Clinic. I have been diagnosed with Benign Fasciculation Syndrome, suspected hypermobility, and essential tremor. I recently had a 6-month follow-up NCS/EMG, with normal findings.
Current situation: my left-hand tremor is fairly consistent, and my thumbs on both hands tremor largely with normal tasks such as typing, food preparation, and driving. My hands appear very bony (concerns about intrinsic atrophy) and my wrists smaller. I have some difficulty manipulating my phone and other small tasks. My movements – especially those of my arms – have been “slow” for some time. After being “twitch-free” for many months, a hot spot returned in my calf, where the twitching is now different – it’s not quick and quite visible, but a more subtle, constant twitch that looks like the muscle is pulsing or “breathing.” My legs get very tired when standing after only a short time. I do not have balance or walking issues, but I must almost “concentrate” when I’m standing for any length of time – even at my counter at home. I also have visible dents in my right leg near the ankle and under the knee, where the twitching returned.
I have been in therapy for anxiety for several months. I have gained back 10 of the 25 pounds I lost. I am hesitant to be in situations where I need to stand for periods of time for fear that my legs will give out.
You hear about cases of clean EMGs in early disease. I understand that fasciculations are LMN, which should show up on EMG (fascics have not been recorded on any of my EMGs). In appointments, I do not show any clinical signs of disease beyond conditions listed above (negative for Babinski and Hoffman’s, normal strength, normal reflexes, etc.). Yet I experience my arms and legs as having weakness. I feel like something is being missed. I want to be reassured by the EMGs, but I don’t know what to make of the lingering symptoms – can weakness and clean EMGs co-exist in ALS?