UNKNOWN AND CONFUSING DIAGNOSIS

[Juanmadazab]

Hello there ,
I'm a 20 year old male , i started feeling sensory symptoms 2 years ago , to sum it up , those symptomss spread to my arms , legs even face and from time to time , genitals , including tingling , perceived weakness but no clinical weakness , Ive had MRI done , including brain ,spinal cord and the whole central nervous system . Results showed nothing to worry about , some small disck problems. ive also had chronic cervical , mid back pain for over year and a half .

I got an EMG done 6 months ago , it showed denervation signs , sharp waves , fibrilations in legs , back , and polyneuropahy , but my doctors have ignored the polyneuropathy conclusion due to my other symptons . On the other hand , 2 months ago i started with tongue twitches , confirmed by a neurologist , they come and go , but lately they have been a little bit more constant , i feel weakness in my face and in my tongue ,

i do not have slurred speech , but 3 days ago i started feeling with trouble while swallowing , its more a weird , heavy sensation than dysphagia , but im not sure , im a medstudent so i have an idea about this , doctors were worried about the first EMG , 1 month ago , i got another EMG done , also in tongue , it came 100% clean , but the "bulbar" symptoms i have been feeling make me believe otherwise. I also have twitches all over my body , sometimes they're frequent and small , and other days i can feel them throughtout the day ,

2 neurologist have checked me while being lying on bed , relaxed , no twitches , but i just feel them and also feel them all over my body and my family have seen them, specially in my tongue and limbs. The weird feeling in my throat and tongue is killing me because im scared of ALS , sometimes i feel my thumb muscles become weak , and they do , but its temporal , i also feel like the muscles around my throat , they hurt , i feel the constant need of touching my neck for relieve ,

i dont think its anxiety , it might be , ive been trying to be chill about it but when you feel all these type of symptoms its hard not to. Last doctor i went to , she wrote in the report upper motor and lower motor neuron symptoms , due to small hyperreflexia and twitches , but no atrophy or other symptoms . I have been going to the gym , last time i went i felt weak , not being able to get to certain repetitions , but at the end i end up finishing my workout , so id assume no clinical weakness , but the pain , tingling sometimes and "weakness " i feel in my arms , and legs its really annoying , lately the weakness increased in my right leg , but it also comes and goes .

I also have temporal mandibular joint disorder , no diagnosed but its very likely it is , and buzzing in my right ear started today. I also feel hella tired somedays , i struggle with using stairs , not a big struggle , just feeling tired and heavy overall , but there are days its better.

No multiple sclerosis for now or some blood disorders , even tho theres some left to be done.

Sorry for the long text , but basically my fear has increased due to the "bulbar" symptoms , i will repeat the EMG soon , hoping jt would come clean and its just another disease but a MND one. I'm open for any thoughts about this. Thanks

 

[lgelb]

I am not sure why you are repeating a clean EMG given a recent clean one, clean MRIs, given no clinical weakness, and evidently no concern from the two neurologists you have seen recently for ALS. Where have the neurologists recommended you go from here? It sounds like you might want to return to a good internist and be worked up more systemically if not done as yet. And discuss possible anxiety affecting your physical issues with a counselor who understands mind/body issues.

If you have TMJ problems, see your dentist for evaluation and maybe a night guard.

I see no reason to worry about ALS from what you have said.

 

[Juanmadazab]

My neurologist wants to repeat the EMG due to the first one showed a up lot not good stuff , later on i got another EMG done , month and a half ago , since im having weird and uncomfy swallowing , more tongue twitches and facial / tongue weakness. He wants to completely rule out ALS .

 

[lgelb]

My suggestions stand, since I truly don't think you have ALS but believe that you can feel much better. Putting your life on hold while this possibility (to you) plays out is unfair to yourself.