Neck Weakness? Can't tell reality from OCD: ALS FEAR AGAIN.

[Lilly13]

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 Is he just outdated?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]

I would see another younger doctor to be honest.

[Lilly13]

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 Do you think he has some outdated knowledge on twitching?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?

[Lilly13]

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..

[KK77]

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

[pulisa]

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.

[RadioGaGa]

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

[RadioGaGa]

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.

[Lilly13]

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...

[RadioGaGa]

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.