Anyone worried about MND/ALS?

[Welshlou]

Hi all,

For about 2 months now Ive been obsessing over this, ever since I heard someone on the radio mention their husband had it. I've been constantly strength testing myself, I've been to the GP twice, a neurologist (who is an expert in the field) twice, had an EMG of calve muscle, quads, hamstrings, tricep, deltoid, trapezius, mastoid area and tongue. All tests came back normal and the neurologist said he cannot find anything.

Anyway, my latest symptom is a strange feeling with my tongue when I speak (posted about it recently). It seems to be catching on my teeth or it somehow just feels different when I speak. It also looks a little bigger on one side than the other, which I am scared is to do with weakness. However, the nurologist had a good look at it and said it looked absolutely normal. I am just freaked out that the EMG tests have somehow not picked up on it, which the EMG neurologist insisted would not be the case.

Crazy I know, but I am really scared at the moment and would appreciate some words of wisdom, or to know if anyone else had been in the same boat?

[Speranza]

Hi, there are a few threads on this. My Dad had MND and I can assure you tests DO pick it up.

The tongue thing is a very common anxiety symptom. It's really annoying isn't it! But the best thing to do is keep your mind busy with other things.

[Welshlou]

Hi, there are a few threads on this. My Dad had MND and I can assure you tests DO pick it up.

The tongue thing is a very common anxiety symptom. It's really annoying isn't it! But the best thing to do is keep your mind busy with other things.

Thank you for your kind post. When I hear that people have had the disease it makes me feel really guilty for worrying about it, especially after bothering so many docs and specialists who say I don't have it.

[Speranza]

No need to feel guilty but do feel reassured. In fact Dad had a lovely death and I am no longer afraid of dying because of watching him.

[arfasc]

Hi,
my mother had ALS..
I can say as well that they found it at the first small symptoms.
I don't know how, but they sent her 1 week in hospital for checks and was not difficult to diagnose.

I had the same fear one year after her death.
I was crazy that I had the same desease, or could be hereditary.
I went to gp I went to 2 neurologist and I had all kind of symptoms.
So I can understand your worry.

I can guess that you are focusing on that but the problem is somewhere else?
Do you do any kind of "therapy" that could help you?
:)

[Welshlou]

Hi,
my mother had ALS..
I can say as well that they found it at the first small symptoms.
I don't know how, but they sent her 1 week in hospital for checks and was not difficult to diagnose.

I had the same fear one year after her death.
I was crazy that I had the same desease, or could be hereditary.
I went to gp I went to 2 neurologist and I had all kind of symptoms.
So I can understand your worry.

I can guess that you are focusing on that but the problem is somewhere else?
Do you do any kind of "therapy" that could help you?
:)

Hi thanks for your reply.

I constantly try to reassure myself by re-reading the letters from the specialists, but I still seem to be obsessing over it. The tongue thing just feels so weird and real.

Yes I am having counselling sessions, which helps to a degree, but I think I might need to see a psychologist instead.

[ElizabethJane]

Dear Welshlou I'm sorry that you are troubled with thoughts about MND. My Mother died in 1988 from MND. It is a very cruel illness and it robbed her of her speech, mobility, coordination. It is a cruel illness and thankfully still very very rare. She did not have a peaceful death - quite the opposite choking on her own saliva and unable to breathe she had a heart attack. I'm sure that you haven't got this devastating illness. In my Mother it was quite difficult to diagnose as she had muscle weakness and twitching in her legs. Speech and swallowing went a little later on. From diagnosis to death it was eighteen months.EJ