Bulbar ALS?

[olivia0703]

It's been two months since my left temporalis muscle starting twitching like a fast, erratic pulse. There have been times when it's quiet apart from the odd pops and other times when it goes non-stop for two days. I have become so scared it's bulbar ALS that I am barely functioning. I have read the sticky but since it's such a rare disease and health anxiety is so common, I figure the thing about twitching meaning nothing is just to soothe majority. There are scores of published medical papers saying that twitching can occur first and all the major medical institutions like May list twitching as a presenting symptom. I really don't know how to get out of this spiral. My GP just blows off my concerns as anxiety. Every second of every day is just something to be "got through". I can't live like this

[ankietyjoe]

It's been two months since my left temporalis muscle starting twitching like a fast, erratic pulse. There have been times when it's quiet apart from the odd pops and other times when it goes non-stop for two days. I have become so scared it's bulbar ALS that I am barely functioning. I have read the sticky but since it's such a rare disease and health anxiety is so common, I figure the thing about twitching meaning nothing is just to soothe majority. There are scores of published medical papers saying that twitching can occur first and all the major medical institutions like May list twitching as a presenting symptom. I really don't know how to get out of this spiral. My GP just blows off my concerns as anxiety. Every second of every day is just something to be "got through". I can't live like this

Stop reading medical papers that you cannot possibly understand about something you don't have.

That's how you break the spiral.

[pulisa]

When you seek out these medical papers what are you actually hoping to find? What sort of reassurance could they offer or are you actually wanting to prove to yourself that you have the disease?

[ServerError]

My GP just blows off my concerns as anxiety.

Nah, your GP recognises your condition as anxiety and tells you so.

[olivia0703]

When you seek out these medical papers what are you actually hoping to find? What sort of reassurance could they offer or are you actually wanting to prove to yourself that you have the disease?

I'm looking for something that would convince me I don't have it

[Fishmanpa]

I'm looking for something that would convince me I don't have it

Other than reality?

FMP

[olivia0703]

The thing is, I don't find that pinned post from the ALS forums reassuring. It's written to allay the fears of people anxious about having the disease, but the bit about twitching contradicts all the major health institution sites (which all say twitching can be a presenting symptom) and the experience of PALS on the site itself.

[ankietyjoe]

The thing is, I don't find that pinned post from the ALS forums reassuring. It's written to allay the fears of people anxious about having the disease, but the bit about twitching contradicts all the major health institution sites (which all say twitching can be a presenting symptom) and the experience of PALS on the site itself.

Reassurance seeking is part of the problem.

The symptoms you have are part of anxiety, and it's YOU creating the issue by assuming it's something far worse.

If you need reassurance, that's a problem.

If you experience a twitch, you need to learn to shrug it off and get on with your day. A lot of the dialogue you use is in the style of medical papers, so in essence you've spent a large portion of your time training yourself to fear something you don't have.

75% of people on this site will have, or are experiencing twitching. It's very, very, very common.

[Mocadona]

The thing is, I don't find that pinned post from the ALS forums reassuring. It's written to allay the fears of people anxious about having the disease, but the bit about twitching contradicts all the major health institution sites (which all say twitching can be a presenting symptom) and the experience of PALS on the site itself.

I somewhat agree on the post - because the disease seems to have so many varying onsets it's hard to pin it down, but one major thing the post does highlight is that ALS is not even suspected without progressive clinical weakness. So if you want to waste your time going to a doctor with a twitch which they will tell you is benign then go ahead. Personally thanks to some help from here I've come to the realisation that twitching isn't a big deal.

I don't know about these scores of medical papers either - have they sad twitching is the only presenting symptom or was it accompanied by anything? The Mayo clinic website lists nothing about presenting symptoms that I can see, just a list of symptoms. That's the thing, we aren't medically trained so we can't fully know what the relevance of these papers are. I've always had twitches, if God forbid I developed this disease I could say "Oh I had twitching before the weakness" and that is put in a paper to be read by people like us who put 2 plus 2 together and get 5.

Kyllikki has already given you the best reassurance you can get about this - the temporalis muscle isn't innervated by the correct nerve for Bulbar ALS, so try to focus on that. Also ALS is incredibly rare - bulbar is about 20% of those cases so if it's 2 in 100,000 your chances are already out to about 1 in 250,000 - disregarding age. As Joe says above try to shrug off or challenge these thoughts, I'm doing a bit better now but it is hard work.

[olivia0703]

I've been trying to focus on it not being a bulbar nerve, then I read all about twitching faces, cheek atrophy, chewing problems etc. And there are loads of published papers about twitching as a presenting symptom if you are stupid enough to type that into google. Some say focal isn't a worry as ALS twitching is widespread, others say the exact opposite. It's bonkers. What they say on the "Could This be ALS?" threads directly contradicts what the PALS themselves says, so it's obviously just something that is said to nervous posters. Most of the insistence about twitching not being an early symptom seems to originate in BFS groups, something they say to reassure themselves. I can't find it anywhere reputable.

The craziest part is that I went through this scare five years ago. I can't believe I am back there. It beggars belief. But here we are ...

ETA: Why can't I just have regular HA? I'd kill for a swollen lymph node or a suspicious mole about now