Ccat376
New member
- Joined
- Dec 25, 2022
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hi there. I hope everyone had been able to have the best holiday season possible.
I am worried about potential ALS (obviously, as I am here). I will try to make this as short as possible.
I am 27F which I know makes it even more unlikely to be ALS but not impossible.
About 2 months ago I started waking up in the morning with a very tightly clenched left hand that was stiff in the joints. Since then, I have noticed my hands being clawed or curled up a lot, and fingers a bit weaker (more on that later).
Around the same time, I started to feel odd while walking — like I was walking through sand or water. A week or so later, I started to have what I perceived to be tingles and other parethesias in my feet and legs(which I know points away from a dx).
The weakness in my legs has continued to worsen over the last few months. This has really worried me as before this started I was young, active, a runner. I am honestly not sure where it falls on the perceived/clinical weakness scale. I can heel and toe walk and do a squat if I really concentrate, but I shake like a leaf walking down stairs and my ankle muscles are stiff and shaky. I have seen a neurologist who did a very brief exam and didn’t really say much about the strength results. I am however very hyperreflexive, I believe bilaterally. The weakness is in both legs/feet/ankles, but worse in one. Thinking back, I have been tripping on somethings more than usual, but never fallen or tripped just over myself (there was always a slight unevenness in the path etc but the tripping was more frequent).
I cannot tell myself if there is any atrophy, if there is I do not see it clearly. The tingles and weird sensations have continued pretty relentlessly (which again I know is not typical of ALS, but now I’m second guessing if it’s just anxiety making me feel them.)
I have developed a tremor in my hand, noted by the nuerologist. This has made somethings hard, for example putting in a small earring the other day was almost impossible. I shake when gripping something very tightly, but I can hold a cup, text, button things.
The most recent symptom, which is what really spiked my anxiety about this specifically, is constant twitches in my feet over the last two days. It is in both, but seems worse in one. I have also had twitching in my claves and quads.
My neurologist has ordered an MRI and if that is clear, said she will order an EMG. I am just now in anxious anxious limbo.
I understand that while several things may align, others do point away, such as the tingles and the weakness being in both legs, albeit unevenly. I guess I am just wondering if ALS always manifests unilaterally/in only one limb at first, or if there are abnormal cases where that is not the case (most reputable info online says “usually”), or if it’s possible to have multiple limbs lightly affected at the same time.
I did ask my neurologist if it could be ALS and she said “I don’t think so but I’ve been wrong before” which was… not the most reassuring! Ha. Then she asked me if I had twitching. At the time I said no, but now I do, which is what has made my anxiety skyrocket. (Last 2 things— I have had twitches before, so on their own I would not be worried, just in totality. Also I do have high level of health anxiety that I am actively working through, but do not believe is the root cause of all my symptoms.)
Many thanks in advance for any thoughts. Wishing you all light this season.
Apologies, an addendum: the weakness and tremor do seem to fluctuate slightly day to day, if that is helpful. For example, my hand has been okay today and I could put that earring in with little trouble. Sometimes I am very shaky on the stairs and sometimes I am more steady.
I am worried about potential ALS (obviously, as I am here). I will try to make this as short as possible.
I am 27F which I know makes it even more unlikely to be ALS but not impossible.
About 2 months ago I started waking up in the morning with a very tightly clenched left hand that was stiff in the joints. Since then, I have noticed my hands being clawed or curled up a lot, and fingers a bit weaker (more on that later).
Around the same time, I started to feel odd while walking — like I was walking through sand or water. A week or so later, I started to have what I perceived to be tingles and other parethesias in my feet and legs(which I know points away from a dx).
The weakness in my legs has continued to worsen over the last few months. This has really worried me as before this started I was young, active, a runner. I am honestly not sure where it falls on the perceived/clinical weakness scale. I can heel and toe walk and do a squat if I really concentrate, but I shake like a leaf walking down stairs and my ankle muscles are stiff and shaky. I have seen a neurologist who did a very brief exam and didn’t really say much about the strength results. I am however very hyperreflexive, I believe bilaterally. The weakness is in both legs/feet/ankles, but worse in one. Thinking back, I have been tripping on somethings more than usual, but never fallen or tripped just over myself (there was always a slight unevenness in the path etc but the tripping was more frequent).
I cannot tell myself if there is any atrophy, if there is I do not see it clearly. The tingles and weird sensations have continued pretty relentlessly (which again I know is not typical of ALS, but now I’m second guessing if it’s just anxiety making me feel them.)
I have developed a tremor in my hand, noted by the nuerologist. This has made somethings hard, for example putting in a small earring the other day was almost impossible. I shake when gripping something very tightly, but I can hold a cup, text, button things.
The most recent symptom, which is what really spiked my anxiety about this specifically, is constant twitches in my feet over the last two days. It is in both, but seems worse in one. I have also had twitching in my claves and quads.
My neurologist has ordered an MRI and if that is clear, said she will order an EMG. I am just now in anxious anxious limbo.
I understand that while several things may align, others do point away, such as the tingles and the weakness being in both legs, albeit unevenly. I guess I am just wondering if ALS always manifests unilaterally/in only one limb at first, or if there are abnormal cases where that is not the case (most reputable info online says “usually”), or if it’s possible to have multiple limbs lightly affected at the same time.
I did ask my neurologist if it could be ALS and she said “I don’t think so but I’ve been wrong before” which was… not the most reassuring! Ha. Then she asked me if I had twitching. At the time I said no, but now I do, which is what has made my anxiety skyrocket. (Last 2 things— I have had twitches before, so on their own I would not be worried, just in totality. Also I do have high level of health anxiety that I am actively working through, but do not believe is the root cause of all my symptoms.)
Many thanks in advance for any thoughts. Wishing you all light this season.
Apologies, an addendum: the weakness and tremor do seem to fluctuate slightly day to day, if that is helpful. For example, my hand has been okay today and I could put that earring in with little trouble. Sometimes I am very shaky on the stairs and sometimes I am more steady.