Terrified I have Bulbar mnd

[flatterycat]

Thanks Beatrice

I am definitely in the throws here.
I have now dropped three items this morning and have convinced myself that my lower left leg is smaller than my right.

I am desperately scared and unable to be rational at the moment. Each 'symptom' is proof in my mind.

Typically I read a blog by an mnd sufferer and she described how she had been waking herself up with noises. Of course I then saw this as yet more evidence. Recently I have been making a sort of groan/moan when I am drifting off to sleep which wakes me. This has only started happening in the last month along with all my other symptoms:

Funny sweet taste
Dent in tongue
muddling words
twitching in both legs
dropping things
one calf slimmer
noises as I drift off

Sorry, but listing them sown is helping me.

I really am sorry that I am writing all this but, like I said, I am so scared.

Sarah

[Kingdawson]

Noises as you drift off is now an ALS symptom?

---------- Post added at 18:08 ---------- Previous post was at 18:02 ----------

Thank you for replying.
My anxiety is really high st the moment and I am really struggling to remain calm, to the extent that I had to go back to docs to do for more reassurance. She did some strength exercises which were all fine. However the twitching in my calves and thighs is bad. It’s effecting both legs in all sorts of places. It feels like little twitches and pulses bubbling under my skin. She told me that if it was mnd she would be able to see the twitching (even though I was wearing skinny trousers) which then scared me as I have seen twitches move before. She told me that when they see them it’s very obvious but it hasn’t alleviated my fear.

The twitching is horrible.

Hmmm can't everyone see their twitches?

[BeatriceJ]

Sarah , I feel for you , I’ve been there with this irrational fear . Your mind and body are completely on heightened alert . I used to also wake myself up with a funny noise , as well as body jolts . You can no longer look objectively at things , you are looking for signs that confirm that you have this disease , yet they are not signs at all . I also was obsessed with studying my tongue , noticed what I thought was atrophy , measured my legs ( obsessively) I was convinced the one calf was atrophied , I thought people were just hiding it from me when they said they say no difference when I showed them . When I look at my legs now , I honestly think what the hell was I thinking ! The mind is so so powerful , it really is . You have to try and break the cycle . Health anxiety is thought to be a form of ocd which makes sense as we have obsessive all consuming thoughts and have a compulsion to carrrout certain behaviours such as bodily checking , googling symptoms etc . I know it’s really really hard but it is really not helping ing you going on blogs from people with MND , it’s kind of like self harm really . Are you having any help with the real illness you have - anxiety?

[flatterycat]

Hi Beatrice

Thanks for your kind words. I’ve just started CBT, but only really had an assessment so far. I have a session tomorrow, so will share what’s been going on with her. I know the therapist is tough so am expecting some hard work ahead. She told me it won’t be easy as I have had over 40 years of thinking in a particular way.

I really hope that it is all anxiety, but, as you know, it’s not that easy to believe. If it was, then this forum wouldn’t be so full of people struggling.

X

[BeatriceJ]

How did your cbt session go Sarah? , hope it went well . Like you say will take time ,but definitely a good move !

[flatterycat]

Hi Beatrice

It was ok. I have to start "being kind to myself' she said. Apparently this is important because I need to learn to comfort myself when I'm anxious instead of relying on others for reassurance. I have to complete a thought diary and try to come up with alternatives.

Didn't have a good morning. Woke up at about 5am and kept getting this weird swallow thing and the moan I am making when I drop off to sleep. The swallowing is a bit like an involuntary jerk - I swallow and it wakes me (just like when we jerk a leg etc) I'm trying to remind myself that I have had this swallowing now since 2015 and that it always happens when I am anxious.

My twitching is still there (particularly in my legs) and I've noticed I am highly alert to my speech and chewing to see if it feels right, which of course them makes me feel it's not.

Thanks for your help and support x

[BeatriceJ]

Glad it went ok . Well done for going . I remember also going through a stage of worrying about bulbar onset , like you I started focussing in on swallowing etc , the more I did it , the worse it got because I was obviously focussing in on it . That weird noise in throat thing from sleep, I had so many strange things happening to my body that I convinced myself were signs I had it! , when I started getting really bad cramping in my feet that’s when I thought oh my god this is definitely it - of course it wasn’t . It is crazy what the mind can do and the impact this can have on the body . It’s hard to believe though because when you look at the physical symptoms of anxiety the usual more common stuff comes up “ palpitations , upset stomach , sweating et etc” so we then think our symptoms can’t be caused by anxiety , but I am a firm believer so many of them are . Please feel free to private message me anytime , I’m more than happy to help where I can , being in the MND h although anxiety fear was the worst time of my life , I have managed to get out of it and happy to help /support others x

[saynotopanic]

Made an account just to reply to this.

I've been through this! Swallowing difficulties, the sensation of something stuck in the throat. Twitching in the legs and arms (very visible twitching!). Drove myself insane, and was fully convinced I had MND. And one leg is definitely bigger than the other.

That was 6 years ago. I still twitch. I still get the feeling of something stuck in my throat - and I'm still very much alive and completely fine - and definitely DONT have MND

[flatterycat]

Thank you for sharing your experience too. I am still struggling with the fear and keep swinging between mnd and lung cancer. As I write it I know it sounds over the top to many but in my mind I have symptoms which could point to these illnesses. This all started with an odd sweet taste in my mouth in November. It’s still there today and nobody can tell me what it is. Obviously through my googling I found scare stories about the taste, one of which was lung cancer or brain tumours. I then became obsessed about the bt because it had been a fear for well over a year anyway. I ended up having an mri 3 months ago which was clear so put that fear to bed. But the taste is still there.

Then I had muddled words and twitching etc etc and so I leapt on the mnd fear.
The taste in my mouth is consuming me and when it isn’t it’s the twitching.

[flatterycat]

Hello

I posted on here last week about my fears of MND. I have read the post 'Why you don't have MND' and spoken to my doctor, however the fear is still alive in me and I'm struggling.

I keep finding my speech is off, not pronouncing words correctly, muddling works and (to me) my words seem as though they aren't crisp or clear.

I am having lots of twitching in both legs, which is further adding to my fear.

Now I have a feeling of weakness in my right hand. It feels like when you've been out in the cold for too long and your hands get so cold that it's difficult to write or grip. My hands aren't cold, but the sensation is the same. The other day I went to pick up my knife and my fingers felt stiff and weak. Then today, whilst reading posts on here I read about someone whose mnd started with not being able to grip his fork. This has completely thrown me into a deeper fear - is my hand becoming weak etc etc.

Has anyone else experienced these sensations without it being something bad?

Sarah