sady
New member
- Joined
- Aug 15, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- NL
Hey everyone,
I'm worried that I might have PLS.
I'm a 26-year-old female, and my symptoms started around three years ago with a cold hand and foot. It felt like my right-sided limbs were just more sensitive to the cold. I also started having (and still have) recurring right-sided headaches. Nothing special or dramatic. But then I noticed a slight difference between my right and left-side limbs, the right being visibly smaller than the left (the right side is my dominant). I was not sure if it was new or if it's been like this since I was born. I know my right-sided back muscles have been way smaller since I was a kid (noted by the doctor then), but no guarantee with the rest. I pointed out this difference to my doctors and physiotherapist during our last appointments this summer, and they all agreed that the difference is surely there, but it's not worrisome (less than 2cm).
Around a year later, I started to experience a sort of tightness in my right calf and less balance on that leg. Also, it feels like it fatigues quite quickly - especially while standing (less when walking). It feels like I still can push past the muscle fatigue, but it's becoming very uncomfortable. I often shift my weight subconsciously on my left. The same fatigue is happening with the right hand when it's in use. I also experience random pains that feel like a dull, deep ache that comes and goes randomly. Lately, from time to time, walking is painful.
A year after the beginning of the first symptoms the twitching started as well (first in my right leg and soon became widespread). That's when I started to get properly worried and went to a neurologist for a checkup. She did an MRI first and found multiple non-specific lesions in my brain. I was sent to the hospital for further checkups with rheumatologists, as they believed it might have been CNS vasculitis. However, after extensive bloodwork and a lumbar puncture, vasculitis, along with a few other autoimmune diseases, including MS, were ruled out. They assumed that the brain lesions were because of leukemia and chemotherapy/radiotherapy that I had at the age 9-10. However, when I asked them if those lesions are the reason for my symptoms, they just shrugged it off and said it most likely is. But they didn't have an answer to why I was feeling fine the whole time until now. I was given some steroid medication just in case and sent home. The day after getting out of the hospital, I developed a new symptom - my hands started tremoring and it still persists. The right-hand shakes more than the left.
Since the whole ordeal started, I had multiple neuro examinations (clear), three head MRIs (to see if the lesions are progressing, and they are not), one spinal MRI (clear), full bloodwork including CK levels (all normal), thyroid checkup (normal), and EMG performed on both hands (came back clean). I feel like I've done it all and I'm losing hope since nobody can explain anything to me.
So long story short my - symptoms started with a sensitive hand and arm to cold. Progressed into right leg and arm muscle fatigue, tightness, and pains. The right side seems smaller than the left despite being dominant (and I'm afraid it's a sign of slow muscle wasting). Hand tremors and widespread muscle twitching.
So yes guys, I'm getting tired. It's been three years of fear and uncertainty. At this point, I just wish somebody could help me and give me some answers.
So that brings me here. I hope maybe you could explain a few things. I've been reading around this forum for a while now and I've read specifically about PLS since ALS in my case would be very unlikely. Does any of this progression sound to you like possible PLS? Is it common to have clean EMG and normal CK with this disease?
Thank you for your time
I'm worried that I might have PLS.
I'm a 26-year-old female, and my symptoms started around three years ago with a cold hand and foot. It felt like my right-sided limbs were just more sensitive to the cold. I also started having (and still have) recurring right-sided headaches. Nothing special or dramatic. But then I noticed a slight difference between my right and left-side limbs, the right being visibly smaller than the left (the right side is my dominant). I was not sure if it was new or if it's been like this since I was born. I know my right-sided back muscles have been way smaller since I was a kid (noted by the doctor then), but no guarantee with the rest. I pointed out this difference to my doctors and physiotherapist during our last appointments this summer, and they all agreed that the difference is surely there, but it's not worrisome (less than 2cm).
Around a year later, I started to experience a sort of tightness in my right calf and less balance on that leg. Also, it feels like it fatigues quite quickly - especially while standing (less when walking). It feels like I still can push past the muscle fatigue, but it's becoming very uncomfortable. I often shift my weight subconsciously on my left. The same fatigue is happening with the right hand when it's in use. I also experience random pains that feel like a dull, deep ache that comes and goes randomly. Lately, from time to time, walking is painful.
A year after the beginning of the first symptoms the twitching started as well (first in my right leg and soon became widespread). That's when I started to get properly worried and went to a neurologist for a checkup. She did an MRI first and found multiple non-specific lesions in my brain. I was sent to the hospital for further checkups with rheumatologists, as they believed it might have been CNS vasculitis. However, after extensive bloodwork and a lumbar puncture, vasculitis, along with a few other autoimmune diseases, including MS, were ruled out. They assumed that the brain lesions were because of leukemia and chemotherapy/radiotherapy that I had at the age 9-10. However, when I asked them if those lesions are the reason for my symptoms, they just shrugged it off and said it most likely is. But they didn't have an answer to why I was feeling fine the whole time until now. I was given some steroid medication just in case and sent home. The day after getting out of the hospital, I developed a new symptom - my hands started tremoring and it still persists. The right-hand shakes more than the left.
Since the whole ordeal started, I had multiple neuro examinations (clear), three head MRIs (to see if the lesions are progressing, and they are not), one spinal MRI (clear), full bloodwork including CK levels (all normal), thyroid checkup (normal), and EMG performed on both hands (came back clean). I feel like I've done it all and I'm losing hope since nobody can explain anything to me.
So long story short my - symptoms started with a sensitive hand and arm to cold. Progressed into right leg and arm muscle fatigue, tightness, and pains. The right side seems smaller than the left despite being dominant (and I'm afraid it's a sign of slow muscle wasting). Hand tremors and widespread muscle twitching.
So yes guys, I'm getting tired. It's been three years of fear and uncertainty. At this point, I just wish somebody could help me and give me some answers.
So that brings me here. I hope maybe you could explain a few things. I've been reading around this forum for a while now and I've read specifically about PLS since ALS in my case would be very unlikely. Does any of this progression sound to you like possible PLS? Is it common to have clean EMG and normal CK with this disease?
Thank you for your time
