Unsure what is wrong with me, worried and looking for help

[Brlee]

Hello everyone im a 23 year old male and looking for help/advice about what is wrong with me and if you know or have encountered anything similiar.

First off I know I am very young to be worrying about ALS but my symptoms are extremely concerning and coincide with ALS symptoms. My symptoms are widespread body twitches but mainly in my right shoulder, Muscle weakness and fatigue all over my body, muscle atrophy and clinical weakness/failure in my right shoulder, as in I cannot lift my arm above shoulder level and compared to my left shoulder it looks incredibly smaller (Confirmed by my Neuro). Also just over the past week i have been struggling to keep my head up as it feels extremely weak and my voice has started to become hoarse, having difficulty speaking and having trouble swallowing. It almost feels like someone has punched me in the throat.

As of now I have seen my neurologist multiple times and have done all the usual tests (MRI, Neuro Exam, bloodwork, EMG ETC). Before the EMG my Neuro said something is definitely wrong and will need to do the aray of usual tests. My bloods were all good, MRI was good, but was waiting for the moment of truth with the EMG. Finally had the EMG done on my shoulder and to mine and his suprise it was perfectly fine. He said everything looked normal but that there is something definitely wrong with me and only time will tell, and have been asked to wait 3 months until my next appointment to reevaluate.

Since then my voice/neck problems have started and I am extremely worried its spreading and just wanted to know if anyone can provide any input/help and if somehow the EMG missed something. Thank you everyone and sorry for the long wall of text.

 

[KimT]

Is your neurologist a neuromuscular specialist? There are lots of things, other than neurological diseases, that might explain your symptoms but you're going to have to see a doctor again to get to the bottom of it.

I don't think anyone here will be able to offer you any advice except to make a timeline of your symptom onset and present it to your doctor.

Ask what are the possibilities. If he can't answer, ask him what you should do next.

If you can contact him with the new symptoms, maybe he can come up with a plan.

 

[Brlee]

Thanks for the response Kim its much appreciated. My nuero is not a neuromuscular specialist but i was looked over by one when the EMG was peformed and he was just as stumped as my regular nuero, as i have clear muscle failure and atrophy but nothing showed on the EMG. This scary thing about all this is its all happened extremely fast, from onset to now its only been 3 months. So im going to try and get another appointment with my neuro ASAP to discuss new symptoms and possibly get a referral rheumatologist as well. Thanks again, I will update over the new few months.