View Full Version : Exhausting ALS Fear

29-05-16, 03:13
I've had this horrible anxiety about having ALS for almost a year now. My friends and my family think all of this is in my head and just the result of some major anxiety issues. After nearly a year of being so afraid and stressed and worried, I honestly am not even sure if I care that I have ALS anymore. I just want the fear to stop.

I've had twitching all over my body for the last 10 months now. It started with my left hand. I can't remember if it was the hand specifically or a finger but now most of those fingers twitch - usually the thumb. Fingers in my right hand and arm twitch now, too - sometimes my calf muscles, leg muscles, thigh muscles, parts of my upper and lower arms, occasionally in my back as well. Usually it's in my hands and arms though. I'm not sure if it's more prominent when I rest or if that's just when I notice it more but that's usually when it seems more prevalent. When I'm doing something, like driving or walking, I don't notice it happening as much.

I've always been a pretty fast and accurate typist and I've always been a bit of a gamer. Lately - within the last few weeks - when I type, I notice I make a lot more mistakes, and when I'm gaming, my right arm will jerk when I'm aiming down and trying to be precise. These are the only instances where I always notice the twitching but the muscle is actually in use.

Over the last month, when I wake up in the morning, sometimes, my right leg from about mid-calf to upper thigh on the outside is asleep. It's always that part in that leg, not the other side or anywhere else. I wake up in the middle of the night sometimes when that portion of my leg has fallen asleep and have to shake it to wake it back up again.

Also, within the same timeframe, there are these instances of buzzing feelings in my arms/hands that I'm not totally sure how to describe. It sort of feels when you've had too much coffee and your hands and arms feel jittery and unstable.

I have, I guess what would be considered 'perceived weakness' in various parts of my body depending on what day it is, pretty much. Nothing major and nothing that causes me to drop cups or trip or fall or anything. But even right now as I'm typing this, I feel like my left hand is not keeping up with my right hand in terms of typing. While strength is not an issue currently, I'm concerned that precision and dexterity are slowly fading from my fingers.

I've always had trouble managing stress, and things in my home life haven't been very good the last few years. Had a traumatic childhood, and social anxiety ever since - to the point where I barely leave my house. I even work from home. And to add to it, my ALS fears all only started after I watched a movie about ALS on Netflix last year. Before then, I had none of these issues to this degree and this fear did not exist.

I'm 32 years old, I'm native american and I'm female. Statistically, I know I have a fairly remote chance of having ALS but I'm so terrified. I don't know how to get past this. I've never posted to a forum about anything seeking advice, but I don't know what else to do.

Thanks for reading my post. Any help or advice is appreciated.

29-05-16, 06:44
Oh gosh so sorry your in such dispair, firstly after 10'months you'd surely have severe symptoms as the disease is a fast progressive one, you'd have trouble unscrewing and turning keys etc. I think maybe your concentrating on the typing issues to much, not long ago i was obsessed that I had senile dementia and I couldn't remember anything and I would give myself rediculous lists to memorise. So then I couldn't even think of family members names. My health anxiety actually started with twitching that started in on finger like it would pull to the side. Within a week it had spread to everywhere and even now occasionally I twitch for a few days. With als the twitching comes at the end of the disease and doesn't stop. I really think your fine but of course your not going to listen to that as I'm exactly the same. I don't really have any answers for you because if I did I'd be cured myself , take care and I hope this fear passes very soon.

---------- Post added at 06:44 ---------- Previous post was at 06:42 ----------

Also a little funny story, a few years back I was in Spain around the pool and I'd got a new bikini when I looked the label said "als" of course this was a sign and it ruined my hols as I just "knew" this meant impending doom and I really did have it x

29-05-16, 07:04
I'm just a little over 3 months into twitching...10 months? You'd have severe disability by now in some limb.

29-05-16, 11:01
I had this fear in 2015 fortunately I managed to forget my fear after 4 long months of constant worry well the muscles spasms weakness never really stopped but got alot less then this year I've just going through some sort of anxiety/illness now the muscles spasms twitching has started again and my right hand and arm are always weak I sometimes can't swallow or feel my tounge Is too big for my mouth I wake up gasping sometimes as I have some sort of gulping breathing thing going on I'm now too weak to walk although this time my fear isn't als funny enough so I still don't know what it is but I'm sure some of it is anxiety

29-05-16, 16:07
The ALS rabbit hole can be a very difficult one to climb out of. I've seen many threads of those that fear this (especially during the ALS bucket challenge) and it's a difficult thing to witness. It's exhausting to the sufferer as well as those trying to help.

Truly, reassurance doesn't help for long if at all. The best advice IMO is to get professional help in the form of therapy and meds if needed. Twitching in and of itself is not an ALS sign but it is a sign of a stressed physiology. Treating the source helps treat the symptoms associated with it.

Positive thoughts

29-05-16, 22:48
Hi SnowyCats

I really have the utmost empathy for you as I am in a similar position. My fears and anxieties about ALS/Motor Neuron disease have really consumed much of my life. Because I have a history of mental health problems in the past I have found it sometimes difficult to talk to family members about my difficulties. I have started seeing a psychotherapist who specialises in Cognitive behavioural therapy and Mindfulness therapy and I am hoping it will get me out of my present spiral. I am also hoping it will be beneficial to talk through my current difficulties with someone who is not a friend or family member. Are you currently receiving any form of therapy for your problems?

31-05-16, 20:50
Try to think BFS, not ALS. Much, much more common!

14-06-16, 02:21
I read your post and saw no ALS symptoms whatsoever. I've been there and got over the fear. It was the worst year of my life. I literally wasted a year of my life with this fear. I've also become an ALS expert now and caring for an ALS patient at the moment. He lost significant amount of movement in the first 10 months into the disease and it started in one hand.

No pain no limb falling asleep no feeling wobbly or weak. Hand simply didn't work. Muscle wasted and twitched very locally. Lost movement of that hand and arm very quickly. Yours sounds like anxiety symptoms and of course hypersensitivity to your body. The more you focus on your body the more "symptoms" you will find. Feel free to pm me. I'd like to help.

14-06-16, 02:34
Hi - I'm very sorry you're having these fears but let me assure you that you do not have ALS. Everything you describe are classic HA symptoms not ALS symptoms. Just by the very fact that you have had them for a year without serious progression should tell you that. Believe me I've been down the ALS fear road myself. Many with HA have. Go to your doctor and get some reassurance. You don't have ALS though. It's "only" HA.


14-06-16, 05:39
You're exactly where I was same time last year, I really thought ALS would kill me within 3-4 years. Before ALS, my fear was melanoma and as soon as I got a clean bill of health from two dermatologists the fear found a new target.

I noticed my calve muscles were twitching. I thought weird! Let's google it (BAD BAD mistake), when I saw the list of symptoms I started twitching all over. I figured ok this can't be it, need to set an appointment with my GP and I was expecting something like "It's not ALS, go in peace" instead when I brought up my ALS fears he said "only seen 2 cases in my entire 35yrs career, doesn't look like it but I'd prefer to refer you to a neurologist to make sure". Let's just say the walk home from the DRs office was a horrible one, I think I stopped eating for a few days.

Fast-forward a few months, the neurologist ran a few simple tests and it was all anxiety. One thing he said really reassured me, if you feel your twitches then it's not ALS. People with ALS will have a localized twitch that they cannot feel since their nerves are dying.

14-06-16, 07:11
i'm fortunate enough to have started twitching before google was a thing. my muscles started twitching when i was a teenager, mostly little muscles all over my body, often in my forearms, sometimes eyebrows, thigh muscles, fingers etc. just like those muscles would contract and release very rapidly for a period of maybe a half hour at a time? happened all the time, and because i was experiencing bad anxiety but NOT health anxiety yet i just put them down to muscle tension, which is of course what they probably were. still happens a fair bit but i barely notice. or i say to my wife HEY LOOK WHAT MY ARM IS DOING!!

14-06-16, 10:23
I'm no doctor but I can tell you you don't have ALS :) Look up benign fasciculation syndrome, this is what im hoping I have and quite possibly what you could have as well. It could aslo very well be nothing, but BFS mmics symptoms of ALS/MS and other diseases. Im sure you have nothing to worry about :)

14-06-16, 10:54
J -p s experience is particularly reassuring that you don't have als. I,ve had anxiety for years but only just recently( past 2 months) started getting very distressing calve twitching and pain. Dr suggests maybe restless legs syndrome, but of course I,m not convinced. Googling has caused extra stress! The most helpful thing to calm our fears would probably be reduction of symptoms. I,ve read magnesium supplements may help stop twitching so I,ve started that a few days ago. Anyone else had success with this? Let you know if it works. Good luck.