Terrified I have MND/ALS

[SH2727]

For as long as I can remember my HA has centred around cancer fears.

In the last four months I have found out a friend has MND and since then I have been petrified to a point my day to day life is affected.

I suffer terribly from anxiety and in the last year or so I have noticed my words slurring and my tongue feels like it doesn't fit properly in my mouth anymore, if that makes sense! No one around me notices the slurring by the way, but I feel like I go to say words and won't be able to get them out!

I have also in the last 8 weeks started twitching, like pop corn sensations under my skin. I have the twitching everywhere, even my eyes.

I am so frightened and wonder if I have brought the symptoms on through worrying and reading about them because of my friend. Is this possible?

I have seen my doctor and he has referred me to a psychiatrist now as my problem is getting worse and worse.

Bizarrely since I have become terrified of MND/ALS, I haven't had one cancer worry.

Thank you for reading.

[ElizabethJane]

I'm sorry that your health anxiety is focused on MND. My Mother died from the illness and saying that it is incredibly rare one case per 100.000 people per year. It does not sound like MND. Sometimes when we are distressed about something the distress comes out in bodily symptoms. If your doctor was at all worried about your symptoms then he would refer you to a neurologist. I had throat problems after my Mother died too. Please try not to worry focus on your appointment with the psychiatrist and what you are going to say to him. EJ

[mel78]

I share your fears, SH. Am right in the middle of an ALS scare myself right now. It actually gives me some comfort to read your post because I have many of the same symptoms - especially the twitching. Twitching can most definitely be brought on by anxiety. I actually got the ALS fear before the twitching started - but deep down I am almost certain that my mind created the fear and then the body created the symptoms to match (though still feeling very scared here)! It is a horrible sensation. I do notice though, that when I am distracted, I don't tend to get them. Its only when I am sitting down and have time to think (or worry) that they happen.

Its good that your doctor has referred you to a psychiatrist. They may be able to give you some tools to cope with these fears. You will be fine.

[SH2727]

Elizabeth Jane thank you for your kind words. I am so sorry to hear about your mother. In a strange way I am looking forward to my appointment with my psychiatrist as I am desperate to get better! My HA has practically taken over my life and I am so lucky I have a GP who actually listens to me and wants to help.

[SH2727]

Mel78 many thanks for your post. Strangely I got some comfort from your post too. It is comforting to know I am not alone. I bet you know everything there is to know about ALS? I know I do! I Google far too much and have totally and utterly freaked myself out. I hadn't even thought about ALS/MND before my friend was diagnosed and now I am convinced I have it too. Before this my HA was always cancer as I had a friend die of it at a very young age. Even as I type this to you I can see a pattern of why I am like I am, but it doesn't make me feel any better.

I am looking forward to my appointment on Monday and will post on here how I get on.

Many thanks again and best wishes to you.

[Gazman]

MND doesn't work like that, especially twitches all over the body and other more extreme symptoms are present before twitching starts in MND.

Please don't google muscle twitching, it was the worst thing I ever did 2 years or so ago, i've twitched all over " popcorn twitches", twitches in the same place for days on end, twitching in several parts of my body at the same time etc etc, I did all the tests saw all the neuros.. guess what? ... I'm ok, "just" anxiety /stressed nervous system.

I still twitch all over everyday, doesn't bother me any more, please dont let it bother you, I know i'm not a doctor but i'm certain it is just anxiety :)

[SH2727]

Thanks Gazman, I am worried about the speech thing too, but this seems to get worse when I am really stressed. Google is the worse thing ever for health anxiety suffers isn't it? I know I shouldn't do it but I can't help myself!!

[ElizabethJane]

MND doesn't work like that, especially twitches all over the body and other more extreme symptoms are present before twitching starts in MND.

Please don't google muscle twitching, it was the worst thing I ever did 2 years or so ago, i've twitched all over " popcorn twitches", twitches in the same place for days on end, twitching in several parts of my body at the same time etc etc, I did all the tests saw all the neuros.. guess what? ... I'm ok, "just" anxiety /stressed nervous system.

I still twitch all over everyday, doesn't bother me any more, please dont let it bother you, I know i'm not a doctor but i'm certain it is just anxiety :)

My Mother's MND started with twitching and tingling in her legs. This was a long time before the weakness in her legs. The slurring of the speech and the inability to speak and to swallow was later .EJ

[mel78]

Nice way to calm a person's fears ElizabethJane!

[BestMate]

I am sorry that you have this worry at the moment. I too suffer with HA and am having issued with lung cancer worries!! I went through twitching, first in my face then it spread all over. I had it for so long in the end I was sent for mri and to see a neurologist, all down to anxiety!! Then I went through a phase of my muscles cramping all over. Once again I convinced myself I had something terrible. It lasted around three months but it went after around 10 sessions of acupuncture. Now my worry is lung cancer though. Certain stretches and side bends make me feel like I am breathing through a sponge. It really is no fun this HA. Although this time like time and time before it's real!!! I wish you all the luck in the world to try to stop worrying about. I know easier said than done. If you can have the test to put your mind at rest do so. All the best.

[stacy1912]

I twitch alot, big twitches, small pop corn twitching and get all sorts of horrible crampy pains in my muscles. I have seen the GP about it and she says it is probably stress/anxiety or medication. It makes me feel so much better knowing I am not alone with the whole MND fear and please take comfort in the fact that if you search twitching on here over 1000 posts appear. This makes me realise that we twitch as a normal sensation and us anixety sufferers latch on to it and then twitch more!

Take care

[Gazman]

My Mother's MND started with twitching and tingling in her legs. This was a long time before the weakness in her legs. The slurring of the speech and the inability to speak and to swallow was later .EJ

Oh ok, i'm sorry to hear about your mother, i was simply repeating what neuros have told me, and that it is extremely rare to have twitching or any other symptoms before extreme weakness, tripping over, can't pick things up etc etc.


Thanks Gazman, I am worried about the speech thing too, but this seems to get worse when I am really stressed. Google is the worse thing ever for health anxiety suffers isn't it? I know I shouldn't do it but I can't help myself!!

I started to worry about the speech thing too, sure i was sluring my words (nobody else could notice), i developed globus hystericus (lump in throat sensation) which i then thought :scared15: oh no! now i can't swallow properly so it must be MND, it's ridiculous really :blush:

Please please stop yourself from googling, I too had difficulty with it at first but the more times you stop yourself from googling the better and easier (at least in my case) it becomes, you know you wont find anything reassuring when you do it.

Also it might help put things into perspective for you... when i saw my GP who has been a Doctor for 25 or so years he told me in his whole career he had only diagnosed 1 person with MND and 3 of his colleagues (other GPs he worked with) had never diagnosed anyone with MND....