New fear - ALS

[newmama]

I have been through the mill with health anxiety over the years - from MS to cancer to heart problems and now the latest one - ALS. I know that my anxiety and fear gets much worse when stress levels are high - and recently they have been very high - both at work and home - but I can't seem to shake off the fear that this is real this time. My concern is bulbar onset ALS. My symptoms are:
1. excess salivation (worse when I think about it and forces me to swallow lots = more salivation)
2. slight drooling in the corners of the mouth - have had this for a few months. Feel like I need to wipe the corners of my mouth often.
3. Tongue is sore and mouth frequently feels sore and burning at times - I have a very sore, red patch on the right of my tongue
4. Feel like it is more of an effort to speak and my speech isn't quite the same as before - maybe to do with the sore spot on my tongue. Feels like I might not be articulating so well and feels more of an effort to speak. This symptom seems to be worse the more I think about it. (No one has commented on any speech difference).
5. Hoarseness and dry mouth
6. Recently discovered that my tongue quivers slightly when I stick it out and read this could be a bad sign.

My anxiety and stress are at an all time high and with 2 small boys and a husband away I would so appreciate some sensible words. Should I see a doctor or is it just anxiety compounding everything? My uncle died of ALS earlier this year and I think this hasn't helped my fear :-( I need to be here for my boys but am so scared. Please help.

[Serenity1990]

ALS is incredibly rare. As in, so rare some neurologists span a whole career without ever seeing it.

Within already incredibly rare ALS, bulbar onset even rarer. I lurk around the BFS forums (because I have BFS), and obviously there's a few on there who fear (or have feared) ALS. There is a fantastic response on there from the leading ALS specialist in Europe, who says he himself has never seen bulbar onset ALS.

So that's who rare we're talking here. An almost unheard-of initial presentation of an incredibly rare disease.

As for your symptoms, my understanding is bulbar symptoms of ALS are pretty severe. Like all ALS symptoms they come and stay, never fluctuate, and quickly progress. One day you wouldn't be able to swallow, and you never would again. Period.

You mention burning sensations. ALS is a disease of the MOTOR, never the sensory, neurones. This alone should tell you everything you need to know.

[newmama]

Serenity - thank you SO much for your reply. Hugely informative and reassuring.

[Emilym80]

I get dry/burning mouth sometimes. In fact, 'burning mouth syndrome' so apparently a sign to dentists if their patients complain of a burning mouth that they are actually suffering from anxiety and not a dental problem.

Also I think everybody's tongues quiver when they stick them out!

[popejoan]

Hi newmama, I thought I need to write something when I saw your thread. I have had massive ALS fears myself, I'm still terrified of it but feeling so much better with my HA. But whenever I drop something or trip or can't open a jar I feel butterflies in my stomach and get soo scared.

Anyway, I know a lot about ALS as I was obsessed with it and couldn't stay away from google. I read everything about it and watched pretty much all the videos of ALS patients on Youtube. I don't recommend it to you but it made it clear in my mind that its symptoms are not vague, and they progress pretty quickly.

There is no sensory symptoms in ALS so pain, burning feeling, pins and needles these all point away from ALS. First Bulbar symptom is almost always slurred speech but it's not like you slurred your speech once but you could pronounced the same word later perfectly. Once you can't pronounce a letter, that's it, you can never pronounce it again.

Also, from what I watched and read, ALS patients with Bulbar symptoms were thought they were drunk at first so if your friends and family aren't asking you if you've been drinking it's a good sign.

Salivation comes as the disease progresses, until then your speech would be pretty much gone.

Dry mouth is not an ALS symptom at all and also everybody's tongue quiver when sticking out.

I've been there so I know how terrible this fear is. You should stop thinking about it, you don't have ALS and you probably will never have it.