Terrified I have Bulbar mnd [Archive]

flatterycat

05-03-18, 09:44

Please can someone help me to get some objectivity.

Firstly, I will say that I am now getting CBT for my HA, but have only had an assessment so far. My proper sessions start soon.

At the moment I have an awful fear that I have bulbar onset mnd.
It all started because I kept doing 'spoonerisms'. Not the odd one, it was nearly daily for a while. This led me to panic and research speech issues. Naturally I came across mnd, in particular bulbar onset.

Since then my speech has been a bit off and I am worried I am slurring or not pronouncing words.
My tongue has a dent in the side (not the usual teeth mark dents) which I have never noticed before.
I have found myself coughing and throat clearing a lot, for weeks now.

This all has me panicked but then after doing some reading I found more worrying information. One lady with this disease described how she wakes herself up sometimes with a loud noise. I have started doing this (before this fear). A good few times now I have woken myself up with a loud moan. Another thing is that i get this weird startle in my throat (I have had this since about 2015) where I swallow and it kind of makes me jump because it's like a reflex.

I have also got lots of twitching in my calves.

I have started doing strength exercises and keep looking at my tongue. I know it is rare, but that doesn't mean it can't happen to me.

I have an appointment with a doctor later, but am at my wits end. Has anyone else experienced this?

Sarah

Scass

05-03-18, 14:50

Good luck at your gp, let us know how you get on.

All I can say is that anxiety is to blame for a lot of your symptoms. Once you start worrying about them, they become worse.

Good luck today.

Sent from my iPhone using Tapatalk

flatterycat

05-03-18, 16:48

Thanks Scass

I saw the doctor and he listened to all my symptoms. He did some very basic strength tests and said they were all great. He also looked at my tongue and didn't seem to think it was a concern. He did say that nothing I'd said made him think I needed tests.

But, as we all know, it hasn't really changed my fear and I am still scared that I may have it.

Sarah

au Lait

05-03-18, 21:07

That’s great news that your doc didn’t find anything wrong. Right now you have a choice, you can either believe your doc or you can believe your anxiety. Anxiety is the one telling you to ignore the educated evaluation of your doc. It takes a lot of work to challenge anxiety but you can do it. You just need to keep reminding yourself every time that doubting voice pops up that your doc is a professional with years of practice and medical training. If there was cause for concern, even a little bit, he would have said so.

flatterycat

06-03-18, 16:59

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.

NancyW

06-03-18, 22:17

I'm sorry to sound harsh but you did this to yourself by googling.

Now you're saying Google knows more than your doctor?

Am I understanding you correctly?

BazB44

07-03-18, 00:08

some docs need to word things better. most people can see their twitches. Some people even say they have twitches they can see but not feel. Yikes, that would scare me lol.

melfish

07-03-18, 03:30

some docs need to word things better. most people can see their twitches. Some people even say they have twitches they can see but not feel. Yikes, that would scare me lol.

The GP was remiss drawing that distinction between twitches you can and can't see. It's simple not true. Benign twitches can range from tiny movements you can only feel to big walloping popcorn-like twitches you can easily see, and everything in between. If it was a GP, chances are they've seem maybe one or two ALS cases walk through their door, if that, so to make a comment like is pretty irresponsible, imo

flatterycat

07-03-18, 07:20

Both my docs said that if thetwitches were mnd they would be very very obvious.

I have read the post from Fishmanpa and on one level I can see what it’s saying, but the anxiety I am feeling is coursing through me right now.

Has anyone else experienced twitching in the legs like this. I’m also scared because I have felt them when driving and standing, and I read that if they are only there when relaxed, then it s a good sign.

X

BeatriceJ

07-03-18, 08:24

I agree with the others , twitches are twitches irrespective of whether you can see them or not, they are not an indicator for Als/MND . One of the main twitches I had was in a he bottom of my foot , you couldn’t really see it but I could feel it when a put my hand there . I was convinced that this was a more sinister sign , my neurologist didn’t bat an eyelid . The more you focus on the actual twitching , the worse it will get . The anxiety about the twitches is the problem not the twitches themselves . Without other neurological deficits I.e weakness , abnormal reflexes , they mean nothing . Though I know mentally to someone with health anxiety they mean everything .

flatterycat

07-03-18, 10:38

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

07-03-18, 18:08

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

07-03-18, 22:28

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

08-03-18, 00:45

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

08-03-18, 22:04

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

flatterycat

09-03-18, 12:30

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

09-03-18, 20:29

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

10-03-18, 11:14

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

10-03-18, 14:45

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

15-03-18, 08:56

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

Elen

15-03-18, 09:13

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Elen

Kingdawson

15-03-18, 11:22