Mcv831
New member
- Joined
- Apr 13, 2025
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- Rochester
A little over a month ago, I began noticing a fluttering in the muscle of my abdomen near my navel, whenever I would sneeze or cough, and a couple times when I would turn in bed. Nothing constant or really anything that caught my attention. I want to say maybe a week later, I was laying in bed and noticed that my tailbone and lower back between my hips felt very tender and sore.
The next day, after my shower, I was on my bed and noticed my left foot twitched, and it went on all day on and off. A few days later, my right foot began twitching, and now both feet were twitching back and forth, all the while my tailbone being incredibly sore, no position I sat in helped, a few days later I noticed that when I was walking, the heel bones of both of my feet, and the area between my big toe and middle toe and on the bottom of my foot beneath my toes on my left foot was hurting when I walked around. I think another week went on with this, and then one night I felt my right shoulder start twitching, and in my neck, and in my cheek, and I believe my hands and arms started up shortly after as well.
It has now slightly shifted to where I don’t feel the constant twitching in my feet anymore, only sporadically here and there in random areas of my body (feet, legs, buttocks, hands, neck, shoulder, face etc), but now the feeling of my hips and lower back being very sore and causing my legs to feel locked up almost because of the muscles in my hips feel tight, the back of my legs under my buttocks feels tight, my shoulders and neck also sore/stiff and my arms get tired easily, more so in my right arm. Both legs equally get tired easily, and occasionally I’ll feel that same foot/heel pain.
Today I started feeling like my tongue even was over worked (but I was also very tense and probably clenching my jaw/neck and pressing my tongue weird in my mouth so I’m hoping that’s all that is). I also feel like pinched nerve sensations in my hands and feet at times throughout the day (pins/needles)
I have gone to a physical therapist, and had some blood work done to check electrolyte levels (potassium, magnesium, calcium, vitamin d, b12) and everything is within the “normal” ranges for that…b 12 was on the low-med end of the spectrum, same with vitamin D) . My physical therapist did his routine test to check reflexes and things of that nature, and isn’t 100% sure of all my symptoms and if it’s related to muscles/nerves or vitamin deficiency issues, but my reflexes are seeming to be evenly balanced - a little extra jumpy the first time he checked, but a few days later he did them again and it wasn’t as jumpy (maybe because I was so nervous that first visit?), I also have good strength and no weakness issues as far as in the sense that I can still lift my feet/legs/arms/hands, move my tongue, swallow etc.
I’ve been an absolute wreck since this all began, and worrying myself sick quite frankly. I feel like my appetite has diminished a bit through all of this as well.
I keep going back and forth between thinking everything is fine because my symptoms don’t really line up with ALS, and then freaking myself out when new symptoms come about or change slightly, and convincing myself all over again I have this
I guess I’m just wondering if this seems more along the lines of lower back/neck alignment issues, possible fibromyalgia or arthritis etc, than ALS
I’ve also attached a pain point chart that I will be bringing to my physical therapist, so you can see the areas I’m having discomfort/pain/pinched nerve sensations
The next day, after my shower, I was on my bed and noticed my left foot twitched, and it went on all day on and off. A few days later, my right foot began twitching, and now both feet were twitching back and forth, all the while my tailbone being incredibly sore, no position I sat in helped, a few days later I noticed that when I was walking, the heel bones of both of my feet, and the area between my big toe and middle toe and on the bottom of my foot beneath my toes on my left foot was hurting when I walked around. I think another week went on with this, and then one night I felt my right shoulder start twitching, and in my neck, and in my cheek, and I believe my hands and arms started up shortly after as well.
It has now slightly shifted to where I don’t feel the constant twitching in my feet anymore, only sporadically here and there in random areas of my body (feet, legs, buttocks, hands, neck, shoulder, face etc), but now the feeling of my hips and lower back being very sore and causing my legs to feel locked up almost because of the muscles in my hips feel tight, the back of my legs under my buttocks feels tight, my shoulders and neck also sore/stiff and my arms get tired easily, more so in my right arm. Both legs equally get tired easily, and occasionally I’ll feel that same foot/heel pain.
Today I started feeling like my tongue even was over worked (but I was also very tense and probably clenching my jaw/neck and pressing my tongue weird in my mouth so I’m hoping that’s all that is). I also feel like pinched nerve sensations in my hands and feet at times throughout the day (pins/needles)
I have gone to a physical therapist, and had some blood work done to check electrolyte levels (potassium, magnesium, calcium, vitamin d, b12) and everything is within the “normal” ranges for that…b 12 was on the low-med end of the spectrum, same with vitamin D) . My physical therapist did his routine test to check reflexes and things of that nature, and isn’t 100% sure of all my symptoms and if it’s related to muscles/nerves or vitamin deficiency issues, but my reflexes are seeming to be evenly balanced - a little extra jumpy the first time he checked, but a few days later he did them again and it wasn’t as jumpy (maybe because I was so nervous that first visit?), I also have good strength and no weakness issues as far as in the sense that I can still lift my feet/legs/arms/hands, move my tongue, swallow etc.
I’ve been an absolute wreck since this all began, and worrying myself sick quite frankly. I feel like my appetite has diminished a bit through all of this as well.
I keep going back and forth between thinking everything is fine because my symptoms don’t really line up with ALS, and then freaking myself out when new symptoms come about or change slightly, and convincing myself all over again I have this
I guess I’m just wondering if this seems more along the lines of lower back/neck alignment issues, possible fibromyalgia or arthritis etc, than ALS
I’ve also attached a pain point chart that I will be bringing to my physical therapist, so you can see the areas I’m having discomfort/pain/pinched nerve sensations
Attachments
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