Just can't shake ALS fears.

[Sollace]

Hello everybody, I've tried to stay off the site for the past week or so and just forget about worrying about ALS. It reached a point where for a few days I was simply avoiding looking at my left index finger at all, and today when I couldn't resist looking it all got so much worse.

Basically, 3 weeks ago I noticed twitching in my left index finger- making it twitch inwards to my middle finger. That started my worrying, however I do realise now that twitching is not an early symptom of ALS. What worries me now is that comparing my left and right index fingers- my left index finger is definitely skinnier where the twitching was occurring- between the knuckle and finger joint on the side it was twitching towards. Furthermore, if I move my index finger side to side I can feel an almost popping feeling in the lower muscle. If I think back quite a long time, I believe I can recall thinking it was skinnier quite some time ago- but the memory isn't vivid enough to be certain.

I've been consistently conscious of the dexterity of my left hand, and have been able to do everything you need to do in normal life just fine, but am terrified of what might develop.

I honestly just want to go the doctors at this point- but I know it would be stupid to go in and tell them about twitches in a finger (that stopped weeks ago), and how that finger looks skinnier compared to my right index finger.

I know at the age of 19 it is incredibly unlikely that I have anything like this. Indeed, I realise that the increased saliva production I've consciously been noticing these past few days is due to reading about it being a symptom- but I am still at a loss with myself, because my left index finger is definitely skinnier than my right.

EDIT: I Just thought I'd mention that since writing this post my left index finger twitched again- the first time in 3 weeks. Furthermore, it feels sore, so I'm probably going to make an appointment tomorrow to see the doctor- even though I have no idea what I'm going to say.

[vincy]

Hey man. You may have seen my posts on here before, but I've been worrying about ALS for about 7 months now. It started with being afraid of limb onset, but a full emg of all 4 limbs as well as my paraspinal muscles cleared me of that without any shadow of doubt.

I realized as soon as I got home that he didn't test any muscles in the bulbar region. Uh oh! Conveniently, the very next day, I started feeling like my tongue wasn't sitting properly in my mouth, and had some perceived trouble saying my words (this was a month and a half ago). I still feel like I have some trouble talking, but after a month and a half, it is getting to the point where if I had bulbar ALS it would be getting worse, and THERE IS NO WAY other people wouldn't be noticing by now.

Starting a few days ago, though, I feel like there is way too much saliva in my mouth and THAT has been way more of a bother to me than worrying about my speech. I feel like I have to swallow mid-sentence or else I'm just going to start drooling or something. I am not super overly worried though, because this happened to me near the beginning of my ALS fears and went away after about a week. I'm sure it has to do with the anxiety.


Anyways, kinda rambly, but I am also 19. Deep down I think we both know we are fine. It is just the worrying that eats away at me!


Try to not think about your "symptoms" for a while. Try your best to keep it off your mind.

Do they disappear? If so, you proved to yourself you don't have ALS!

[Sollace]

Thanks for your post.

Yeah, most of the symptoms do disappear. The only thing really bothering me right now is that the finger I had the twitch in is a bit thinner than the equivalent finger on the right hand side.

But with that being said- it's been almost a month since I started worrying about this. The only difference I've noticed in that time is that my finger stopped twitching.

[Becazican]

I just joined and i am terrified that i have the beginning of als. So i do understand how you both can become so super sensitive about you own body, one thing i can tell you with both your age your chances are 1 in a few million to come down with als. I am 65 and a veteran started having neuropathy problems in dec, my gp sent me to a neurologist and he did lots of blood test and an emg, came back with toxic levels of b6 (I don't take supplements) emg showed normal but the ncv part showed sensimotor neuropathy due to diabetes and b6, well my sugar levels have never been high and b6 is just a fluke i think, so my legs started to twitch a lot so of course dr google led me to als. In may I showed up and ask for anothe emg, didn't mention i was scared of als, emg came out with all zero s which is good, now i am flying to oregon to the Oahu to see a neurologist that specializes in als and perpheral neuropathy, so i do understand your fear, i am on klonopin morning noon and night. I feel for you and i know your fear. My heart goes out to you.

[vincy]

I just joined and i am terrified that i have the beginning of als. So i do understand how you both can become so super sensitive about you own body, one thing i can tell you with both your age your chances are 1 in a few million to come down with als. I am 65 and a veteran started having neuropathy problems in dec, my gp sent me to a neurologist and he did lots of blood test and an emg, came back with toxic levels of b6 (I don't take supplements) emg showed normal but the ncv part showed sensimotor neuropathy due to diabetes and b6, well my sugar levels have never been high and b6 is just a fluke i think, so my legs started to twitch a lot so of course dr google led me to als. In may I showed up and ask for anothe emg, didn't mention i was scared of als, emg came out with all zero s which is good, now i am flying to oregon to the Oahu to see a neurologist that specializes in als and perpheral neuropathy, so i do understand your fear, i am on klonopin morning noon and night. I feel for you and i know your fear. My heart goes out to you.

Just to make our other 19 year old friend feel better, the amount of cases of SPORADIC onset als at 19 years old is dwarfed by the number of FAMILIAL cases at our age. It is NEARLY unheard of at 19. At 65, there is certainly more reason to have it on the radar, but it definitely sounds good for you too~

PM me if you ever need to talk, either of you or anyone who reads this!