After doing nonstop reading/research and a particularly hard week, I decided to go out and get my nfl blood test results. I went to labcorp and just got my results this morning.
Neurofilament light chain - 1.04ng/mL
Z score - 0.49
The reference table cut off for my age (33) is 0.0 - 1.49.
Anyone have any insight? I obviously know it’s within the normal limits but it freaks me out being closer to the limit than 0.
Hello I’m a 21m, about 2-3 months ago I was diagnosed with a mild case of carpel tunnel through an emg text I did, which alone is rare for my age. I do have some trouble with slurring my speech occasionally and honestly I’m just fearing the worst. Has anyone else had similar diagnosis that lead to an als diagnosis?
Im wondering how much people paid for a private emg in uk ? If they did ?
Im really suffering. Im in so much PAIN. What is going on. No answers and im literally dying a little more each day. The spasmes are so painfull.
I’m currently 22 years old, and for the past 5 months, I have been dealing with progressive weakness on one side of my body and widespread twitching. One day in late October, I woke up with this heavy feeling in my left leg but not to the point where my leg was dragging. I just happened to feel a difference in my left leg, then I did in my right. I wasn’t too worried about it because I figured it would be gone after a day or 2, but it was a persistent feeling. Around the same time, I began to notice my left hand would become cold very quickly compared to my right hand, but I didn’t really pay it any mind. But after a couple of weeks, I noticed a weakness in my hand and forearm.
As a couple of weeks went by, that heavy feeling in my left leg was still there, so I decided to go to the gym and test my strength. Throughout my workout, I noticed that my left leg would become fatigued quicker than my right leg. I also tried playing basketball, which is something that I normally do to see if I was still able to move like I normally do. I was still able to run and jump, but again I still felt a difference. Fast forward a couple of days, I started to notice twitching in my left leg, which then started to worry me. I began doing research on the symptoms I was having, and I came across ALS, and after that, my mental health for the past couple of months has been on a downward spiral.
Around December, I started talking about my symptoms to my primary care doctor, who then referred me to get a whole bunch of blood work done to rule out different disorders. All of my blood work came back normal except for one test, which was my CK level. My CK level came back as a 261, which was slightly elevated. I was told not to worry because a mildly elevated CK level is normal for someone who is my size (6ft, 200lbs). I was then ordered to get a CT scan with contrast on my brain as well as a cervical spine CT scan, and both came back normal. More recently, I was able to see a neurologist who was able to perform a strength test on my upper and lower body and told me that my strength was perfectly fine. It felt good to hear, but I have been dealing with this weakness for the past five months, and to be told that it is probably anxiety is very tiring to hear. He also ordered me to get an EMG, which I just had four days ago, and I’m still waiting on my results. He also ordered me to get more blood work to check my muscles, so I received another CK level test, which came back as a 241, and an Aldolase test, which came back 5.4..
I also forgot to mention that throughout these past couple of months, I began to notice that my left quad was smaller than my right quad, and my left arm is smaller than my right arm. I didn’t really pay too much attention to my left arm being smaller because I did tear my left labrum back in high school, so my left arm has always been smaller. But I don’t recall having a difference in size with my quads. I tried to think as though it’s always been like that, but to have the left-sided weakness isn’t really reassuring. But like I said earlier, at times I will go to my school’s rec center to play basketball to test my feeling, and I am still able to run and jump. I just still feel a difference while doing it. Also, more recently, I have noticed that I have been having more twitching in my face and neck area, and for the past two weeks, my mouth has been super dry when I wake up in the morning. The left side of my neck feels tight/stiff. I noticed that my soft palate is lower than usual, which makes it weird to swallow, and my tongue looks smaller than normal, so it feels really weird to talk for a while.
I know this is a lot to read but i just wanted to share this with other people to get different opinions. This has really been affecting my life mentally because it’s literally been my main focus for months.
**2 weeks later**
My EMG came back, and I don’t know how to feel about it. My results came as having mild nerve issues at the wrist on the left, consistent with carpal tunnel, and small, nonspecific changes in one foot muscle, likely from local irritation or pressure. Everything else was normal. I was happy to see that it didn’t seem like anything serious, but at the same time, it wasn’t what I was expecting. The arm weakness, leg weakness, and widespread fasciculations don’t really make sense to me. My neurologist said that my twitching is benign and I don’t have anything to worry about, but my body is telling me something different. I keep being told that everything else is anxiety, and everything that I am feeling is in my head, which kind of sucks to hear it constantly. I thought my EMG would take some weight off of my shoulders, but now I’m skeptical if this is just the start. Please tell me if you feel like I’m tripping because this has been weighing too much on my head.
Ive been experiencing widespread muscle twitching for about 3-4 weeks now. They’re predominantly in my lower body but occasionally in my arms and back. I still have full motor control, possible perceived weakness but i don’t think it’s clinical weakness. Ive been going to the gym fine i guess.
Is this enough time to rule out any sort of mnd? Im visiting a primary care physician next week to make sure, but what do you guys think?
da quasi 8 mesi ormai combatto ogni giorno con fascicolazioni diffuse in tutto il corpo e spasmi alle dita di mani e piedi…stanchezza generale, ma nessuna perdita di forza o debolezza, riesco a fare tutto…quello che più mi fa paura è che il mio corpo è cambiato in una maniera spaventosa…ho una flaccidità diffusa in tutto il corpo che non ho mai avuto prima d’ora…è come se le zone colpite dalle fascicolazioni apparissero sempre più molli oppure riuscissi a sentire troppo le ossa…7 mesi fa ho fatto un’Emg ed un’elettroneuromiografia in quasi tutto il corpo ed il risultato era pulito…poi visita neurologica da un luminare (che mi ha lasciato un po’ perplessa) che detto essere tutto okay…una settimana fa ho fatto un’ecografia muscolare in tutto il braccio destro per vedere se ci fosse atrofia…ed il referto riporta che i muscoli sono sani e normoconservati…i sintomi però continuano a peggiorare così cone la flaccidità…sono sempre stata una persona in perfetta salute, con una massa muscolare molto sviluppata…ho fatto una quantità di visite ed esami del sangue davvero notevole e non è emerso nulla…qualcun altro ha vissuto la mia stessa situazione? mi sento di star impazzendo perché ogni giorno il pensiero che possa trattarsi di sla mi fa vivere nella disperazione…continuerò a fare visite ed esami fin quando non troverò una soluzione.
I finally had my neurology appointment the other day for dizziness and fasciculations all over my body. They found hyperreflexia, positive hoffmans sign, and mild asymmetry (left greater than right). They also noted fine fasciculations in bilateral calves which I don’t even feel but they’re there. I only feel the twitches that are strong. Before this appointment, ALS left my mind and I was no longer worried about it because I wasn’t having weakness and I’m still not, plus the twitches happen everywhere, not just my calves. But I googled the crap out of it and of course, google says to get in my coffin. I also do not have atrophy. I just got my blood work back and my CK was 37 so I assume that is normal. Everything else blood wise was normal too except sed rate was 29. I’m 27 years old and a parent to a toddler who needs me so the thought of having a disease, let alone a deadly one, scares the shit out of me. I do have 3 MRIs and an EMG scheduled in 2 weeks but that feels like forever from now.
Obviously I am truly hoping I have BFS, which I'm sure is the case for most of us. I'm wondering if I should get a second opinion. I went to a neurologist a week ago due to hand tremors which started in January. They have really picked up in March to almost every other day. Sometimes you can see a fasciculation in my palm and subsequent tremor and sometimes not. It's either hand. It only lasts 2-10 minutes at most and really just once a day. Then in the last month, I've been getting the fasciculations all over my body, but only for a second, and they happen so quickly I can't see them. I really wouldn't say I have any weakness at all. One single day I had tremors in both hands, all day and a different motion than normal, this was a day after I had drank a significant amount and with no visible fasciculations. TBH I thought I was going to be getting a Parkinson's diagnosis when I went in, but the doctor told me no based on the videos I showed him.
He said there was no need for an EMG because unless I had the tremors or fasciculations during the test, it would just show normal? However, it seems like a lot of people in this group have gotten that test done. That is why I'm wondering.
He said based on the evaluation in the office, we can't do anything but wait to see how I progress over the next 6 months. He said I either have BFS or ALS, but he doesn't *think* it's ALS based on what he could see.
I really didn't think it's ALS based on no weakness, but I also don't know if it's BFS or if we can truly just rule out Parkinson's since my primary concern is hand tremors?
Any opinions or insights are appreciated. I am also 31F. So I realize that makes ALS unlikely as well.