nightOwl13
New member
- Joined
- Jan 19, 2023
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello all, I would much appreciate your input on what's going on as I'm currently waiting for an EMG/NCS, but that's not for two months and my symptoms are worsening at a pace faster than that.
I'm 30F, and I'm having significant leg weakness that started in one leg and rapidly spread to the next.
I went to a neurologist on 11/2 because I had a single leg spasm that left my right leg feeling weirdly tight, and had burning pressure/pain on that side when sitting. I didn't expect him to find weakness in that leg but he did (4/5 hip flexor). Reflexes were all normal, Babinski absent, etc. He sent me for the full brain/spine MRI thinking that it could be MS. He ended up sending me to an MS specialist for some "suspicious" lesions in the brain MRI, but spinals were clear.
While I waited for the specialist appointment, I would walk around the house frequently as it hurt too much to sit. As time went on, I noticed the leg getting weaker, but I could still walk on it relatively alright. I started noticing a lot of twitches in both legs as well, but tried to ignore it.
The night before the specialist appointment (1/11), I had a terrible cramping pain shoot down the OTHER leg. 20 minutes later, as I was falling asleep, I had an episode that felt like my leg/foot was having a seizure, and after that that leg felt weak as well. I have to admit I cried when this happened, as up until this point I was trying to tell myself it was an entrapped nerve, but now I was significantly terrified of ALS. It honestly felt like a muscle died or something in my leg. I've also had intermittent fatigue/discomfort of my right shoulder as well as a squeezing sensation in my right inner elbow.
The MS specialist told me that I "definitely did not have MS", and that the lesions in my MRI are non-specific. He tested all of my reflexes, which were normal again. He tested my senses, which were all normal except for some mild vibratory loss in both legs. He did not do all of the motor tests that my general neurologist did, just had me walk down the hall and back and stand with my eyes closed. He basically said "I don't know what is wrong with you, but it's not MS". He suggested possible piriformis syndrome for my initial leg (and honestly, the initial symptoms did seem like it) and kinda just shrugged about the other leg and said "maybe it happened there too." I asked about ALS and all he said was "you are too young for ALS, maybe in 30-40 years." He wants to do EMG/NCS though, and thinks there may be something going on with my hips. He ordered a CK test, which came back on the low end of normal, and I'm awaiting the aldolase test results. The new neurologist wrote in his notes that "the weakness was not apparent" even though he didn't do the motor tests that initially found weakness in the first leg. His notes DID say that he suspects a neuromuscular issue "like piriformis or sciatica" despite no pinched nerves in my spine and bilateral piriformis syndrome being basically unheard of.
I'm currently at a point where I can only walk slowly. This was not the case two weeks ago. I cannot run. I pedaled on an exercise bike for maybe ten seconds before I had to stop, and my legs felt horribly jelly-like for the rest of the evening. The bottoms of my feet are constantly twitching, and they cramp frequently—the bottoms of my feet have always been prone to cramps though due to flat feet. I still have full mobility of the feet though, as far as I can tell. I have frequent twitches in my legs, but not constant like on the bottom of my feet. I have no more pressure pain when sitting, but the weakness in my hips is there and the weakness is a different kind of uncomfortable. I have moments where I get an overwhelming sense of "I need to change positions NOW" that comes with a rising sense of discomfort if I do not move. I feel the weakness mostly in my hips and quads. My lower back is mildly sore/burning, and I'm starting to get muscle twitches there as well. I've also lost ten pounds (which is a lot for me at 5'10", now 130lbs), but I have not been eating nearly as much as I should due to severe anxiety. I can't tell if I have muscle atrophy or not because I've always been extremely skinny to begin with, and my last year has been fairly sedentary due to the job I had.
So my questions are:
1. Has anyone here had ALS start in the hips/quadriceps? Everything I'm reading says it USUALLY starts distally, but can start with proximal muscles. My feet and ankles so far still have full range of motion, and I'm confused that all of my reflexes are still 2/normal across the board.
2. Is such a rapid onset (totally fine and mobile to significant weakness in both legs in a month) possible? If it was both at the same time I would be inclined to think it was something else, but it started in one and spread to the other). Days before this started I was able to do squats with my boyfriend, now I cannot imagine doing one.
3. Is the weakness that happens instant? And does spasming happen at the moment of loss? I don't know what happened with my second leg, but it was fine and strong one moment and then suddenly not after the strange spasming episode.
4: Pain? I know pain is not a direct symptom, but I don't know what else to think. My first leg had burning pain down the back of the thigh and in the hip for WEEKS, but now that pain is gone and only weakness remains. The other leg did NOT have the burning pain, only the initial cramping pain and then weakness.
5: CK test: I've read this is usually elevated in PALS but not always? Is it still possible if it's kind of low? I assumed mine is on the lower end because I'm skinny, but I also read that the CK drops in patients as they lose muscle mass.
6: Is there anything else this could be? At this point I'm hoping for like... functional neurological disorder or malabsorption or ANYTHING that isn't ALS or something similarly terminal. My B12 was fine though, so it isn't that at least. I'm so terrified and I'm afraid that by the time the EMG comes around in two months I'm going to be completely non-functional with how fast this seems to be spreading.
I know you guys cannot diagnose me, but honestly I feel like I'm running out of other things it could be, and Google of course has done a fantastic job of scaring me senseless. I'm only 30 and I know the likelihood of someone my age getting it is less but... The clinical weakness combined with the twitching is scaring me, and the fact that the neuro only gave "you're too young" as a reason for me not having it isn't necessarily comforting.
Thank you all for spending what time you have to respond to this.
I'm 30F, and I'm having significant leg weakness that started in one leg and rapidly spread to the next.
I went to a neurologist on 11/2 because I had a single leg spasm that left my right leg feeling weirdly tight, and had burning pressure/pain on that side when sitting. I didn't expect him to find weakness in that leg but he did (4/5 hip flexor). Reflexes were all normal, Babinski absent, etc. He sent me for the full brain/spine MRI thinking that it could be MS. He ended up sending me to an MS specialist for some "suspicious" lesions in the brain MRI, but spinals were clear.
While I waited for the specialist appointment, I would walk around the house frequently as it hurt too much to sit. As time went on, I noticed the leg getting weaker, but I could still walk on it relatively alright. I started noticing a lot of twitches in both legs as well, but tried to ignore it.
The night before the specialist appointment (1/11), I had a terrible cramping pain shoot down the OTHER leg. 20 minutes later, as I was falling asleep, I had an episode that felt like my leg/foot was having a seizure, and after that that leg felt weak as well. I have to admit I cried when this happened, as up until this point I was trying to tell myself it was an entrapped nerve, but now I was significantly terrified of ALS. It honestly felt like a muscle died or something in my leg. I've also had intermittent fatigue/discomfort of my right shoulder as well as a squeezing sensation in my right inner elbow.
The MS specialist told me that I "definitely did not have MS", and that the lesions in my MRI are non-specific. He tested all of my reflexes, which were normal again. He tested my senses, which were all normal except for some mild vibratory loss in both legs. He did not do all of the motor tests that my general neurologist did, just had me walk down the hall and back and stand with my eyes closed. He basically said "I don't know what is wrong with you, but it's not MS". He suggested possible piriformis syndrome for my initial leg (and honestly, the initial symptoms did seem like it) and kinda just shrugged about the other leg and said "maybe it happened there too." I asked about ALS and all he said was "you are too young for ALS, maybe in 30-40 years." He wants to do EMG/NCS though, and thinks there may be something going on with my hips. He ordered a CK test, which came back on the low end of normal, and I'm awaiting the aldolase test results. The new neurologist wrote in his notes that "the weakness was not apparent" even though he didn't do the motor tests that initially found weakness in the first leg. His notes DID say that he suspects a neuromuscular issue "like piriformis or sciatica" despite no pinched nerves in my spine and bilateral piriformis syndrome being basically unheard of.
I'm currently at a point where I can only walk slowly. This was not the case two weeks ago. I cannot run. I pedaled on an exercise bike for maybe ten seconds before I had to stop, and my legs felt horribly jelly-like for the rest of the evening. The bottoms of my feet are constantly twitching, and they cramp frequently—the bottoms of my feet have always been prone to cramps though due to flat feet. I still have full mobility of the feet though, as far as I can tell. I have frequent twitches in my legs, but not constant like on the bottom of my feet. I have no more pressure pain when sitting, but the weakness in my hips is there and the weakness is a different kind of uncomfortable. I have moments where I get an overwhelming sense of "I need to change positions NOW" that comes with a rising sense of discomfort if I do not move. I feel the weakness mostly in my hips and quads. My lower back is mildly sore/burning, and I'm starting to get muscle twitches there as well. I've also lost ten pounds (which is a lot for me at 5'10", now 130lbs), but I have not been eating nearly as much as I should due to severe anxiety. I can't tell if I have muscle atrophy or not because I've always been extremely skinny to begin with, and my last year has been fairly sedentary due to the job I had.
So my questions are:
1. Has anyone here had ALS start in the hips/quadriceps? Everything I'm reading says it USUALLY starts distally, but can start with proximal muscles. My feet and ankles so far still have full range of motion, and I'm confused that all of my reflexes are still 2/normal across the board.
2. Is such a rapid onset (totally fine and mobile to significant weakness in both legs in a month) possible? If it was both at the same time I would be inclined to think it was something else, but it started in one and spread to the other). Days before this started I was able to do squats with my boyfriend, now I cannot imagine doing one.
3. Is the weakness that happens instant? And does spasming happen at the moment of loss? I don't know what happened with my second leg, but it was fine and strong one moment and then suddenly not after the strange spasming episode.
4: Pain? I know pain is not a direct symptom, but I don't know what else to think. My first leg had burning pain down the back of the thigh and in the hip for WEEKS, but now that pain is gone and only weakness remains. The other leg did NOT have the burning pain, only the initial cramping pain and then weakness.
5: CK test: I've read this is usually elevated in PALS but not always? Is it still possible if it's kind of low? I assumed mine is on the lower end because I'm skinny, but I also read that the CK drops in patients as they lose muscle mass.
6: Is there anything else this could be? At this point I'm hoping for like... functional neurological disorder or malabsorption or ANYTHING that isn't ALS or something similarly terminal. My B12 was fine though, so it isn't that at least. I'm so terrified and I'm afraid that by the time the EMG comes around in two months I'm going to be completely non-functional with how fast this seems to be spreading.
I know you guys cannot diagnose me, but honestly I feel like I'm running out of other things it could be, and Google of course has done a fantastic job of scaring me senseless. I'm only 30 and I know the likelihood of someone my age getting it is less but... The clinical weakness combined with the twitching is scaring me, and the fact that the neuro only gave "you're too young" as a reason for me not having it isn't necessarily comforting.
Thank you all for spending what time you have to respond to this.