One year of hell, should I see a doctor again

[adenosine]

Hello everyone, I have read the "read before posting" so I will try my best to follow the rules.

24, female

About a year ago I started feeling fasciculations and weakness mostly on my legs, some on my arm. They were extremely wobbly. I lurked a bit on this forum and because the symptoms were in multiple areas I assumed this was either anxiety or a pinched-something. I got a CT scan of my whole spine and there was nothing there that would explain this.

So I just tried ignoring the symptoms, but the twitching is constant, and by constant I mean that some part of my body twitches every 10 seconds non-stop, for a year. It feels like there's worms inside my muscles.

I managed to stay out of this forum but I've noticed a concerning change - for the last couple months my left arm feels very weak, and on top of the fasciculations, it also twitches. I have also noticed atrophy both in my L hand and L forearm. I haven't measured it because I'm trying not to go too crazy but it's a visible difference.

I can still move my hand, grab stuff, but I find it very difficult. For example, I have a hard time holding my phone or a coffee mug with my left hand. It starts shaking like crazy, like it weighs 10x more, and I need to put the thing down or else I'm afraid I'm gonna drop it.

So, to sum things up - what makes me feel more relieved is the fact that I *also* have these fasciculations in other parts of my body, also I have no swallowing/speaking issues that I've noticed.

What makes me extremely worried is that my left arm is weak, atrophied, twitching and has these fasciculations. I would maybe be less worried if this issue was symmetric.

The only test I've done was the CT scan, my doctor kind of brushed me off after that, but again, this was a year ago. My fear is that I may have benign fasciculations due to stress, BUT I have more recently develop ALS because I can't find any plausible explanation for what's happening to my left hand.

So I humbly ask you guys for your thoughts about my situation. I probably should make another doctor's appointment but in my country those take up to 6 months. If you guys think it's bad enough I can save up to go to a private doctor.

Thank you so much for reading, I hope I wasn't disrespectful in any way. Have a wonderful day everyone.

 

[lgelb]

The odds against anything like ALS are very long. If you are able to see a physio for your arm to be evaluated, I would do that.

 

[adenosine]

Thank you so much for replying. I was planning on going back to my family doctor (she was the one that ordered the CT scan), and then I imagine she would refer me to a neurologist (and if the wait was too long I'd go to a private neuro), so I am curious about what a physio would do to my arm/hand? Would they be able to diagnose anything, or ask for any exams/tests to be done?
Thank you for reassuring me that the odds of ALS are not high, I'm guessing you believe I do have an issue with my arm, just not this illness in specific (I know you can't diagnose me, just checking if I understood correctly, English is not my first language!)

Have a blessed day

 

[lgelb]

A physio can baseline your strength, mobility, and muscle tone/bulk. If/as they see issues that might be causing problems and that are in their professional scope of practice, they suggest a regimen to address them. If they think another kind of clinician should be involved, they refer you out.

 

[adenosine]

Update: not reassuring at all

So sorry to be bothering but I have no one to talk to about this

So I went to the private neurologist since she had a spot available the next day. She did all the standard stuff I suppose. She told me I need to do an EMG, MRI of my cervical spine and some blood work. I didn't ask about ALS in specific but I did ask if she thinks it's something serious or not.
She made it extremely clear that it could be something very serious, and she would like to detect it as early as possible. She didn't downright say I had some terrible pathology, but she said she unfortunately can't rule that out right now. I feel like my whole world just fell apart. I thought she was just gonna say "you're fine it's anxiety just relax", but she was concerned from the very beginning... I don't know if she saw some twitching in my tongue or if my knees had insane reflexes (which they did), but she saw something that caused concern. Surprisingly she didn't test my strength or ask me to walk or stand on my tippy-toes, but either way apparently I'm [expletive removed].
I have the EMG on the 28th, these next 2 weeks are going to be absolute hell.
When I left the hospital I received a call from them to make sure I was gonna schedule the exams, and the following morning I got a notification that the neurologist asked to schedule a follow up appointment. This never happened in that hospital so now I'm even more worried.

I just want to cry, I can't believe this is happening

 

[lgelb]

I wouldn't freak out about this. There is a big difference between strong clinical suspicion and "can't rule something terrible out before more tests," especially if your own concerns were clear. If you have read this subforum much, you have seen that many people had EMGs and very few were diagnosed with ALS as a result. And many of the things she's testing for have better treatments than we have for ALS atm.

 

[adenosine]

Thank you, I guess I'm freaking out about the way she was trying to not make me worried - but she also couldn't reassure me because that would be unethical in case I do have something. Her overall demeanor changed after listening to my symptoms and that scared me. I even lightly joked "oh it could just be stress" and she said "absolutely not, this is not normal" and "you shouldn't have ignored this for so long".

So now I wait for the EMG. I know I'll have to wait for the report, but from your experience are they able to tell me if things look ok or if I'm gonna get some bad news right after the EMG is done?


I'll update after the EMG just in case someone in the future is in a similar situation to mine. Not feeling very optimistic right now :-(

 

[lgelb]

The procedure for informing you of the EMG results varies. You may or may not get a sense or definitive statement the day of the test. That does not signify anything result-wise, just procedure-wise.

Re her comment, again there is a lot of territory, as in hundreds of conditions, between "not normal" (which can still be benign or very treatable) and ALS.

 

[adenosine]

Update: I'm probably ok

Managed to get the EMG today. Got the thing with the needle and the thing that shocks you. OUCH!
Just want to mention that today I looked at the referral paper and the neurologist mentioned that she thinks she saw miofasciculations on my tongue. So as you can imagine I was horrified.

Doctor only performed the exam on my right calf and thigh. Says the exam looked good and she didn't see any fasciculations but she believes me when I told her I feel them (they're just not detectable by the machine which points away from a bad diagnosis - her words). But I can't help but not feel super relieved by this because I feel like she didn't get the whole picture(?)

Now mind you I was not the best patient - the exam hurt pretty bad and I may or may not have cried a little bit, so she only performed the exam on the "mandatory" areas (just the 2 places) and that was enough to rule out any pathology. I really want to believe her

I asked about the tongue thing, she looked at my tongue for a couple seconds, asked me to move it to the sides and said it was fine. I do feel my tongue doing these weird twitches. I can eat just fine, talking feels weird but it could be because of this whole stressful situation.

Anyways, I'll talk about the tongue thing with the neurologist on the follow-up apt. But the doctor that performed the exam was pretty sure that I'm ok. I still have the blood work and the MRI to do, but I seriously cannot afford the MRI so I don't know what's gonna happen.

Will update again after neurologist appointment, hopefully she agrees that I'm fine...