I'm a 29 year old woman and I'm from the US. I've been reading posts on this site for a few months now trying to relax about what is going on. I guess I will start from the beginning.
I had a tonsillectomy back in December of 2016 and my neurological symptoms began about 4 weeks after that. Started with numbness in my arms and face and my arms felt "floppy" and weak. That went away and my brain and cervical spine MRI came back normal. I stopped worrying. A few weeks later around April, I clipped a 3-ring binder shut with my left hand and noticed my left index finger twitch side to side after that. I didn't think anything of it and let it go as a "tweaked nerve". However, the twitching continued. My left index finger has twitched every day around 30 times a day since this incident. At this point, I started looking up what this might be. Saw Parkinson's and ALS/MND on the list. Of course my ALS/MND fear started then. Weeks later, I noticed I was getting twitches in other parts of my body. From head to toe including my tongue and inside my vagina. They aren't constant. At least not noticeably constant. But they are hundreds of time a day every day things. Shortly after this, I began having cramps in both calves and noticed I could not do as many squats as I usually do. I went to my GP at this point who told me she thinks I have a neurological disorder and that it "sounds like MS". However, the clean MRI I had months prior ruled that out. I was then referred to a neurologist who I saw in late October. I was looking forward to this appointment and was hoping to be told that I am fine and the twitching is benign. He did an assessment and noticed I had weakness in my left arm, hand, and shoulder. I asked him if everything else was normal like my reflexes and he said yes. I didn't really notice this weakness before, but now that he pointed it out, I can recall feeling like it was weaker. I recall how I let it flop in my lap while driving and how I have a hard time holding my bag and how it occasionally feels painful (like I will have a sore muscle for no apparent reason). I asked him flat out if he thinks I have ALS and he looked off to the side, pursed his lips, and said very slowly and with hesitation "I don't think so". I don't want to read into things, but he looked concerned. He asked me if I have injured my left arm or elbow and asked if it felt tender and I said no. However, I do recall a couple days of a sore "funny bone" a year ago. He brought up the possibility this is ulnar neuropathy. That could explain some of the weakness, but would that explain the twitching in my index finger which is controlled by a different nerve? And I doubt it would explain the twitching I have all over or the pain in my calves. He did explain that if it was ALS, I would likely have more severe symptoms by now. He ordered an EMG and I have to wait until December 5th for that and December 20th for the follow up.
So... with all that said... I am still twitching like crazy and getting more anxious.
For the sake of clarity, I want to list out the symptoms I have had since my MRI if you don't mind:
-Twitching in left index finger started in April
-More widespread twitching started around June
-Calf cramping started around July
-Weakness in legs noticed around June or July
-Weakness in left arm started around July, but not really noticed
-All symptoms are getting worse especially the twitching and left arm weakness
I have done what none of us should do and that is google ALS/MND. I have noticed that for every person who makes a claim about it, someone else contradicts it. I find reassuring information like how ALS doesn't start with twitching and cramps only to find the exact opposite information on another site. I also found many people who say their ALS symptoms began shortly after having a surgery which matches up with me.
I do agree with my neuro in that I likely would have more severe symptoms by now if it has been 6 months since the twitching began. I also understand that ulnar neuropathy can cause twitching, pain, and loss of sensation (which I don't have at this point) and that I could have that along with benign fasciculation syndrome.
I'm really nervous about my EMG appointment. I am scared I will hear the dreaded popping and have to sit there and wait for them to say something to me. Will I get results from the doctor who performed it that day?
I've been so scared that I have had to force myself to stop looking things up and stop checking my body for atrophy. I just want to be okay. I'm bargaining for just 10 more good years.
Thanks for any help or guidance with this issue
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