Concerned about possible ALS

[Ndavid17]

Hello everyone first off I just want to say I’m so sorry to anyone affected by this terrible disease. I’m a 20 year old male who has been relatively healthy barring a few conditions I was diagnosed with IBS pretty early on in highschool that has hindered life at times also in highschool I was diagnosed with acne inversa a rare autoimmune disease and in the summer of last year I messed up my lower back by improperly lifting something so now I have a bulging disc that has been causing awful pain for over a year

okay now that’s out of the way around August 7th I woke up one morning and had really bad neck stiffness didn’t worry too much thought it would just go away then a couple weeks later my arms and legs started to feel week along with fasiculations and tingling since that point it has gotten progressively worse holding the phone or going on a walk can really hurt and seems so grueling at times I went to the ER multiple times since then and they’ve done a CT scan on neck that was negative along with my PC who did an MRI on neck that was negative

I finally got a neurologist appointment and it was the most disappointing thing ever she didn’t take me or my concerns serious and said I was too young to have anything bad no additional tests or anything other than some blood work that showed low viatmin b12 and d3 I started taking that and all that’s gotten better is the tingles the burning pain in arms is still prevalent with my left leg while the ankle does feel a little funny most of the weird feeling is based around the knee it feels like theres a bubble of pressure that needs to pop but it doesn’t always hurt mostly just feels weak and doesn’t feel right the neck pain is definetly worse at some times then others but has not gone away since the day it has started which is making me really terrified

I luckily got to a second neurologist and passed the exam but it is frustrating although I know they’re right to be told no weakness is observed when my body feels so much worse over this 2-3 month span I have an emg scheduled in late November pretty much December and just feel so uneasy about everything everywhere I’ve read ALS is about not being able to do something compared to pain I can still do everything it just feels so much harder than before.

Another thing worth mentioning is I’ve read that working out is a good thing to do to kinda fight als and be productive but whenever I workout my symptoms just get worse particularly my legs and feet hurt so much worse after a long walk/ jog sorry for such a long paragraph but any comments and expertise would be really appreciated as I await the emg

Also recently I’ve started experiencing throat problems I like to sing in the car a lot and I’ve been getting this vibration sensation almost like it’s fighting me to come out on top of this when I sing it also seems to hurt the neck. After eating my voice is quite hoarse which is something that has never been a thing before and throat clearing doesn’t really help that much

 

[ShiftKicker]

Hello- please make sure to read here: Read Before Posting

You state a lot of sensory issues. As you will read in the "Read Before" this points away from ALS. Symptoms that come and go, vibrations, pain, tingling, buzzing, pressure, etc, all sound like something else. I hope you are able to continue working with your doctors to figure things out, but ALS would def not be on the list of things to worry about.

 

[lgelb]

I see no reason to worry about ALS, but would wonder why you had vitamin deficiencies -- there has to be reason and it could relate to how you feel -- and whether your spine issue is being adequately treated, among other things. I would also consider asking for a rheumatology referral. This is all a discussion to have with your PCP.

Best,
Laurie

 

[Ndavid17]

It’s actually funny you say that because my dad has RA and I was thinking that could be a possibility. Just wouldn’t explain the weakness and fasiculations.

 

[lgelb]

Some of these things can be products of the original issues -- jangly nerves or muscles can go from one spot to the next -- and others, e.g. fascics, may not be problems at all, anxiety artifacts, etc.

If you started working out more than before (which isn't going to prevent ALS, btw), that could cause its own issues if you amped things up too much or too fast.

Acne inversa can cause secondary bacterial infections, certainly pain, and other complications.

In other words, there doesn't have to be a single explanation for everything that's happening. IBS may have a hand in some of it, like nutritional shortfalls.