Booknerd7820
New member
- Joined
- Oct 11, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
Hey everyone. I just wanted to introduce myself and hope that this will be my first and last post on these forums. I am 40 years old. I have a scheduled EMG in two days and am becoming increasingly worried that I have either ALS or MSA. My neuromuscular specialist is being very cautious in his words, using “Let’s rule out BFS” for the EMG, which will be my third in 3 years, but also scheduled it as soon as he was able based on worsening symptoms.
My symptoms: I have had spasticity in my legs and arms for three years now and moderate to severe autonomic dysfunction (widespread anhidrosis, temp regulation issues, neurogenic bladder). My spasticity responded to Sinemet for a year and then abruptly stopped. I also had small fiber neuropathy that was cured with one year of IVIG and have not had neuropathic symptoms in over a year. I was at Mayo a year and a half ago and my EMG and brain/spinal MRI were clean. At the time Mayo told me that they had no idea what I had. It could be too early in a disease progression or could be something they have not yet identified in the medical and scientific community. I was literally tested for every known Autoimmune disease and everything came back negative.
I have brisk reflexes and positive Babinski sign on both feet. In the past year, I have clinically marked weakness in my right leg/foot and left arm/hand. I am in PT 2-3x a week and frequently evaluated both in clinic and by neuromuscular, so the weakness is not “percieved”. I have always had some random fasciculations, but in the past month they have progressed in frequency and intensity, mainly in my right foot, calf, and hamstring, but occur in most muscle groups. The fasciculations are constant, both at rest and active. The right foot is beginning to show signs of muscle wasting at the location of the most severe fasciculations. In the last 48 hours, the muscle spasms have become aggravating and occur in foot, calf, and quad on right side only. I also have some mild clonus with random leg jerks with my right leg only. With my left hand, I am knocking things over more frequently. Eye hand coordination seems to be the worst.
I can still grasp things, but it takes effort. There is no tremor. I can still walk albeit slowly and have not yet taken a fall. Exhaustion comes on very easily and I have to pace myself throughout the day. As far as voice, my volume has dropped over the past year and I often have to slow down my speech to avoid slurring, but I have not noticed any tongue fasciculations. I saw an ENT a year ago when my speech started changing and at the time I was cleared of vocal cord paralysis which had been a concern.
Anyways, my symptoms are progressively worsening and waiting for an EMG is agonizing. Most days/weeks fly by in a blink, but this week is a crawl to Thursday afternoon. As I said, I plan on giving everyone an update with results, but am not as optimistic as I’d like to be that this is just “normal muscle twitching” or “benign fasciculations” everything else considered. I don’t suffer from anxiety and hate even thinking that this is a possibility, but here we are. I’m a facts girl and the facts so far do not look good on my end.
My symptoms: I have had spasticity in my legs and arms for three years now and moderate to severe autonomic dysfunction (widespread anhidrosis, temp regulation issues, neurogenic bladder). My spasticity responded to Sinemet for a year and then abruptly stopped. I also had small fiber neuropathy that was cured with one year of IVIG and have not had neuropathic symptoms in over a year. I was at Mayo a year and a half ago and my EMG and brain/spinal MRI were clean. At the time Mayo told me that they had no idea what I had. It could be too early in a disease progression or could be something they have not yet identified in the medical and scientific community. I was literally tested for every known Autoimmune disease and everything came back negative.
I have brisk reflexes and positive Babinski sign on both feet. In the past year, I have clinically marked weakness in my right leg/foot and left arm/hand. I am in PT 2-3x a week and frequently evaluated both in clinic and by neuromuscular, so the weakness is not “percieved”. I have always had some random fasciculations, but in the past month they have progressed in frequency and intensity, mainly in my right foot, calf, and hamstring, but occur in most muscle groups. The fasciculations are constant, both at rest and active. The right foot is beginning to show signs of muscle wasting at the location of the most severe fasciculations. In the last 48 hours, the muscle spasms have become aggravating and occur in foot, calf, and quad on right side only. I also have some mild clonus with random leg jerks with my right leg only. With my left hand, I am knocking things over more frequently. Eye hand coordination seems to be the worst.
I can still grasp things, but it takes effort. There is no tremor. I can still walk albeit slowly and have not yet taken a fall. Exhaustion comes on very easily and I have to pace myself throughout the day. As far as voice, my volume has dropped over the past year and I often have to slow down my speech to avoid slurring, but I have not noticed any tongue fasciculations. I saw an ENT a year ago when my speech started changing and at the time I was cleared of vocal cord paralysis which had been a concern.
Anyways, my symptoms are progressively worsening and waiting for an EMG is agonizing. Most days/weeks fly by in a blink, but this week is a crawl to Thursday afternoon. As I said, I plan on giving everyone an update with results, but am not as optimistic as I’d like to be that this is just “normal muscle twitching” or “benign fasciculations” everything else considered. I don’t suffer from anxiety and hate even thinking that this is a possibility, but here we are. I’m a facts girl and the facts so far do not look good on my end.
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