View Full Version : Neck Weakness? Can't tell reality from OCD: ALS FEAR AGAIN.
Hi guys,
I know that doctors typically offer us worriers only solace... but yesterday I experienced the opposite.. I have been twitching for years (since I was 23) I am now 27. I got over my horrible fear of ALS... and moved onto other less terrifying fears. However, I have recently been under allot of stress with my job, applying to graduate school and dating someone overseas... recently I have begun having this thudding neck twitch/ spasm.. as well my hands have been going numb and my legs have been jelly but I was playing that all off as anxiety. I thought perhaps the doctor could give me a logical explanation for my neck.. as it was really bothering me and I thought it could be related to tension...
HOWEVER.. this time.. he was the one who brought up a neurological disease... he's a doctor covering for my old one.. he is quite old maybe like 70, he looks retired. The first thing he asked me when I told him about the twitching was " do you have family history of neurological diseases?" I said "no." Then he went on to look at my back in weird ways and asked me more about the twitching. He asked if I have seen the twitches and I said no.. as I can't see those ones. He said "its more pathological if you can see them." He also noted that he can't see any on me. BUT HOLD UP - haven't we all been able to see them for years and been fine? Haven't we been told by doctors that twitches alone mean nothing? Then he left me with the horrendous words " if its neurological it will progress, doctors won't do anything about it at this stage even if it is something because these are untreatable." WTF my only symptom is twitching/spasms... no weakness and he didn't do any tests or anything to warrant bringing up those diseases. He also left me with the words "it is likely just spasms they are common, neurological diseases are very unlikely." He also didn't refer me so clearly wasn't worried so why did he bring this up
SO WHY THE OTHER BULLSHIT IF ITS LIKELY SPASMS? Is he just outdated? He did no tests to warrant bringing this up and I feel horrible and terrified.
Please talk to me and learn the lesson that some doctors are not helpful
nomorepanic
19-03-19, 18:52
I would see another younger doctor to be honest.
Hi Nicola,
Why do you say that? Do you think he has some outdated knowledge on twitching? I feel comforted by what we have established on this site and I have also been to a neurologist when I was 23 who wasn't concerned by that symptom...
At this point I'm tempted to just wait for weakness.. and if it never comes then so be it.. do you think someone else can actually reassure me?
I kinda feel more freaked out now... I keep thinking he saw something with my back... but I'm not sure because the first thing he brought up was neurological diseases without examining me and seemed focused on the possibility of twitches which he didn't see.... he didn't mention atrophy or weakness.. someone please talk to me im over thinking and im a complete mess..
I think being an "old school" GP, he simply vocalised what most other docs would think but not say to a patient, as they're more aware of anxiety it creates.
I think he was just being thorough and it's unfortunate he scared the crap out of you.
I don't believe you have anything to worry about with the mild symptoms you have though ;)
The crucial thing is that he didn't want to refer you to a neurologist. He was just giving you the "benefit" of all his years of experience as a GP without knowing that you have HA and would read a lot more into his words. Older and retired GPs have accrued a lot of knowledge over their many years in practice.
I would link to the videos, but I don't think it would be right considering
1. Your anxiety is high
2. This is an anxiety forum
But yes he is right. The twitching associated with ALS is very unusual looking. It's not like the normal twitch we get when we drink too much coffee (for example)
It looks like worms moving under the skin and tbh I think if you had this you'd know. As your doctor seems to be well informed, he'd have known it too.
I agree with nicola on this
IMHO you're fine
Good luck
I'm adding this as a second post, rather than editing my first one as I'm on my mobile and for some reason it deletes when I try to do this on the handset.
I had relatively mild ALS anxiety when I was about 18. I drank red bull by the gallon, drank like a fish, partied constantly - its no wonder I had the twitches.
But I really want to emphasise the videos of the ALS that I saw. They were from the 1970s in that 8mm style camera. But it was NOT like a normal twitch.
It's what made me get over the fear (which never came back since, and that's 7 years ago). It was much slower moving than our twitches and imho looked very abnormal. I honestly think if anyone had true ALS twitching on this forum, they'd know about it because the twitching looked so damn weird.
And yes - the twitches come AFTER the CLINICAL weakness, which you don't report. So, case closed lol.
I thought weakness before switching as well, so why did he even bring up neurological issues? I think you are giving him too much credit..
Also I can visibly see twitches sometimes but yea its a flicker.. not a worm situation.. but this has been happening for years..
now I am focusing on my neck and convincing myself it is weak.. here strikes anxiety again... hopefully it's just anxiety that is...
He was probably just thinking aloud.
I really want to emphasise the twitching video I refer to, it was evident something was not right about this "twitching". I honestly think a bright child of six could have concurred that.
Oh yeah - the area was also clearly "wasting"
You don't have ALS.
im not feeling any better.. now I just feel that this is impending doom.. like I am going to get weaker and weaker.. my neck is now twitching more than ever and I am a complete mess.. I don't know who to trust.. as the doctor had a response that seemed to really think this ALS thing was a possibility.. I was hopeful that he wouldn't think of the possibility..
Don't know how to know if my neck is actually getting weak or if its perceived.
Good news is.. I couldn't find any cases that really onset in the neck.. maybe one and it was in a medical journal.. apparently ALS is a limb onset not a trunk onset typically. This is good for me to know. The total incidence of ALS is 2 in 100,000 and the incidence of trunk onset is 2%.. so nil chances.. who can do stats and help me to figure this out ? Stats seem to help me. I just wish my doctor was less of a quack. :(
You do not have ALS.
What do you plan to do about your anxiety, which is the real issue? :whistles:
unfortunately I am still struggling with these thoughts.. last night while working I got convinced that my neck was getting weak.. as well today I have had wild jolts of muscles in my neck and scalp... just had one in my neck as we speak that moved my whole head.. I don't know what to do.. or where to turn.. I feel so alone. Although I've experienced twitching before I have ever had it in my neck/head and this is terrifying me.
Like is this normal?? I've had anxiety for my whole life and I have never experienced such symptoms that's why I am so beyond scared.
nomorepanic
20-03-19, 15:25
Maybe if you start treating the anxiety things will calm down. We get all sorts of weird things going on when we are anxious and this could just be the cause of yours too.
Maybe if you start treating the anxiety things will calm down. We get all sorts of weird things going on when we are anxious and this could just be the cause of yours too.
But how do I convince myself that it is just anxiety? I feel my doctor provided no reassurance at all... I don't know I feel I am just waiting on impending doom where I can't support my head anymore or something... I know I've been afraid of twitching before.. I guess I am just shocked by how these neck twitches feel.. if they even are twitches.. my head just keeps slightly moving.. I don't know.. it's making me afraid that my neck is becoming weak. I know it sounds ridiculous to everyone in my life.. but really I have made allot of progress in treating my anxiety.. I try everyday to calm myself down but this feels truly different
But how do I convince myself that it is just anxiety?
You go to a GP for physical ailments. You go to a mental health professional for mental health ailments.
Positive thoughts
Hey all,
I got a second opinion, as there is genuinely something going on with my neck.. and he examined me.. did some tapping on my hands/ arms with one of those little hammers ( not sure what that does) .. looked at my neck. Said that it was not neurological but in fact was just tense muscles in my neck causing spasms. He said he could feel the tension.
just in case anyone was curious I did find this helpful because I felt terrified by that other doctor.
note the twitching continues ALL OVER temples, lips, butt, legs, feet, head , neck and I don't expect it to go until the anxiety does. However, I have decided to let go of this ALS/ Neuro fear just as I had to with schizophrenia. Unless there is a BIG SIGN like foot drop or something what is the point? I am making my mental health my number one priority from now on because as of now that is causing the suffering.
Hey guys,
I am a mess yet again. I have been trying so hard to just "accept" my symptoms..accept that if I have ALS that nothing can be done. I have been doing OK with this. Although it is still haunting me. I want to live a happy life with my partner.. I want to attend graduate school.. I want to live my dreams. I am aware that at the current moment it is OCD that is preventing this....but how do I accept things? How do I accept that I might only have function of my neck for another month?
Here is my story recently.. hopefully someone can offer insight. I would very much appreciate it.
I have had random twitches for about 4-5 years.. I accepted these as part of me.. as part of anxiety.. I went to a neurologist and did that whole shindig. However, about a week ago I begin getting this weird bobbing feeling in my neck, the bobbing began causing it to move.. the first thing that came to mind is omg I have ALS and the neurons in my neck are impacted and now my neck can't support itself. Then the aggressive twitches in my neck and head begin. The doctor thinks I am having neck spasms from tension and I am going to go to get a massage today.. I also began taking magensium.
TODAY: I worked out because I wanted to prove to myself that I am not weak.. I took a really difficult workout class where they had us lift weights above our heads and pulse.. my neck began shaking .. is this normal when working out? Did this always happen and I am just obsessed with my neck now?
I can't tell at all... the weird thing is I think sometimes that the bobbing is dissipating but now I feel I am so conscious of my strength in my neck.. I am convinced that this work out has proven how weak my neck muscles are and how I must be developing ALS finally...
Does this seem plausible? I feel so shitty.
Has anyone else had this bobbing thing?
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Elen
I got a second opinion, as there is genuinely something going on with my neck.. and he examined me.. did some tapping on my hands/ arms with one of those little hammers ( not sure what that does) .. looked at my neck. Said that it was not neurological but in fact was just tense muscles in my neck causing spasms. He said he could feel the tension.
Stress, anxiety and hyper-focusing.... really that simple.
Positive thoughts
Yourboymj99
26-03-19, 12:05
Hello Lilly
You were examined by a doctor who came to the conclusion based on his examination that you have tension that is causing your spasms. Now you just have to trust that doctor who actually felt the tension during his examination. And in regards to the "head bob" you refer to. I've lifted weights heavy for 23 years and yes when there is any tightness or muscle tension in the neck or shoulder area it will cause the head to Bob so to speak or even tremble during certain movements. Especially if you are lifting weight at or above shoulder level. Muscle tension in the neck and shoulders is so common with anxiety and really even for those without anxiety. Your good to go, keep exercising as that will help relieve anxiety and tension, just lighten the weight and focus on breathing properly.
Take care
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