Hi there--I've been reading for a while, and was inspired to post by others on this forum who are raising kids and still searching for a diagnosis. I'm 39, married, with an 11 and 6 year old. My neuro history has been going on for 7 years or so, which started with dry eyes and pins and needles in my hands/feet and some left sided facial tingling. My mom has Sjogren's plus other autoimmune conditions, so I immediately went to a rheumy and although my bloodwork wasn't entirely positive for anything in particular, I did at that time have mild indications of inflammation. An EMG around 2004 showed slight sensory slowing on the left sural nerve. I've been on aspirin and plaquenil for this for 6 years.
Really, all was pretty stable until right after Christmas. I was playing a video game with my daughter when I noticed my right bicep had seized up. This arm stayed tender for a few days, then a few days later I noticed my right hand became weak and kind of floppy. In the next couple of days, this also included the left hand, then arm. During the month of January, literally all neuro hell has broken loose. I've had numbness, tingling, burning, in all extremities. I've had nights where I've felt electric shocks were coursing through my body. Numbness and tingling and burning also in my face and tongue. My tongue has felt weaker. It fatigues when I chew gum or eat chewy food. My throat at times has felt numb, and this week started that weird tightening sensation around my neck. Not that it is cutting the air off, but sort of like a tight collar. I've had fasics in arms, legs, back, stomach. Cramps in the arches of my feet and sometimes my neck and shoulders. My arms and legs fatigue easily while I'm doing housework.
So far, my brain MRI is normal (haven't had a spinal MRI yet), and all bloodwork including inflammatory markers, calcium and B12 are normal. That is when I started becoming concerned...no, downright anxious about ALS...when the tests started coming out normal. I'm due for my EMG tomorrow morning. My initial appointment with my neuro didn't show any clinical signs of weakness or gait problems, which was 2 weeks ago. I timidly mentioned being stressed about the possibility of an ALS diagnosis when my MRI didn't show MS lesions, and he said- "no, you don't fit the profile, but we'll do a thorough check anyway." Reading more about it, I see "the profile" can pretty much include any age, and though all this sensory stuff is not typical, many posters here seem to have similar stories to tell.
I'm worried, for myself of course, but mostly for my husband and precious kids. I see myself on a path right now, to try to figure out what this thing is, and I am praying with everything I have that if ALS is the answer, I am spared long enough to finish raising them. Reading your posts has been an inspiration and a comfort to me during this month of extreme worry. Thank you for taking the time to read this.
Really, all was pretty stable until right after Christmas. I was playing a video game with my daughter when I noticed my right bicep had seized up. This arm stayed tender for a few days, then a few days later I noticed my right hand became weak and kind of floppy. In the next couple of days, this also included the left hand, then arm. During the month of January, literally all neuro hell has broken loose. I've had numbness, tingling, burning, in all extremities. I've had nights where I've felt electric shocks were coursing through my body. Numbness and tingling and burning also in my face and tongue. My tongue has felt weaker. It fatigues when I chew gum or eat chewy food. My throat at times has felt numb, and this week started that weird tightening sensation around my neck. Not that it is cutting the air off, but sort of like a tight collar. I've had fasics in arms, legs, back, stomach. Cramps in the arches of my feet and sometimes my neck and shoulders. My arms and legs fatigue easily while I'm doing housework.
So far, my brain MRI is normal (haven't had a spinal MRI yet), and all bloodwork including inflammatory markers, calcium and B12 are normal. That is when I started becoming concerned...no, downright anxious about ALS...when the tests started coming out normal. I'm due for my EMG tomorrow morning. My initial appointment with my neuro didn't show any clinical signs of weakness or gait problems, which was 2 weeks ago. I timidly mentioned being stressed about the possibility of an ALS diagnosis when my MRI didn't show MS lesions, and he said- "no, you don't fit the profile, but we'll do a thorough check anyway." Reading more about it, I see "the profile" can pretty much include any age, and though all this sensory stuff is not typical, many posters here seem to have similar stories to tell.
I'm worried, for myself of course, but mostly for my husband and precious kids. I see myself on a path right now, to try to figure out what this thing is, and I am praying with everything I have that if ALS is the answer, I am spared long enough to finish raising them. Reading your posts has been an inspiration and a comfort to me during this month of extreme worry. Thank you for taking the time to read this.