Terrified I have Bulbar mnd

[flatterycat]

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]

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.


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[flatterycat]

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]

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]

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]

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]

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]

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]

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]

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 .