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Drowning in fear

PostPosted: August 16th, 2014, 1:10 pm
by Sadface
Ok, a few of you prob know me now, and know my story as I've been on this site nearly 12 months!
What started out as fear of limb onset MND (last September), has changed to bulbar!
As previous posts, my tongue does flickers and movements at rest in my mouth. I see this by using my torch on my phone (the wonders or hinders of iPhones.)
I have a clear dent at the side I my tongue. Clear as day and gp can see it.

IF IF IF, this is atrophy and twitches.... Would I be likely to have profound weakness too is MND? Basically, would weakness come before this atrophy??
I have swollow problems at times but I put this down to anxiety as not consistent!
I currently have soar throat which doesn't help matters!

Next question: if it is atrophy and twitches, could it be caused by other less serious conditions rather than als?

Never been neuro
GP not concerned apparently.


Last question: any tips on how to stop checking/worrying/focusing on this issue. Draining the hell out of me

Re: Drowning in fear

PostPosted: August 16th, 2014, 1:33 pm
by German2
Dear Sadface,

I read some posts of your, but don't know your story. I just try to answer your question, whether fasciculations and atrophy (even in tongue) can have other reasons than MND. Yes, there are other possible reasons. But as long as I don't have an idea that there is really a new dent in your tongue, I am not naming that. Especially as I am just a further member with more than twichtes (I have also atrophy but obviously no MND).
Best would be to get an apointment at your neuro.
And by the way: I had also strong swallowing problems in the past. So strong that I got infusion with liquid because I could not drink anymore. Now its gone. And when it comes from time to time I just ignore it. Because I know it is definitely not bulbar onset. That fear was last year....(new one came also with me of course :)

Re: Drowning in fear

PostPosted: August 16th, 2014, 1:41 pm
by Sadface
It's difficult to get past my doctor to refer me to a neuro!
I've asked since last November. Initially due to limb concerns but recently tongue!

Re: Drowning in fear

PostPosted: August 16th, 2014, 1:52 pm
by German2
Ok, I don't know where you live. Here in Germany I am just ordering a prescription and I get one. And if there are fasciculations isn't it normal to get one`? Otherwise what is your gp's opinion where it comes from?

Re: Drowning in fear

PostPosted: August 16th, 2014, 1:57 pm
by Sadface
England, unless your private then you get referred on via normal doctor.
My doctor said twitching happens to everyone and especially anxiety.
Re the dent, she said possibly just the way my tongue is

Re: Drowning in fear

PostPosted: August 16th, 2014, 2:03 pm
by German2
I have just seen that you've posted another tongue post and that a lot of people gave you reassurance. I also think that it is absolutely normal that a tongue quivers when streching out. And I see also dents at its side, there where my teeth are. That is also normal...
So please do not panic about it....

Re: Drowning in fear

PostPosted: August 16th, 2014, 4:40 pm
by Pascal35
What i am doing when in a similar situation with you is i am just trying to move left and right my tongue as quickly as possible.
I compare it with previous times so i get more relaxed.
In addition i also make some self strength tongue tests pushing hard behind both sides of my cheeks and push against the tongue with my fingers.
If your tongue is strong and moves fast, from what i have studied and researched so far, there is no way its affected.

Keep well - You are fine

Re: Drowning in fear

PostPosted: August 16th, 2014, 4:46 pm
by Sadface
Thanks.
I can move tongue about etc. It's just really funny looking.
Reading als sites don't help, so I'm
Going to try avoid them.
My biggest thing is hit being able to trust my doctor by but referring me onto a neurologist.

Re: Drowning in fear

PostPosted: August 16th, 2014, 4:51 pm
by Pascal35
I lived in London for many years. I am sure the GP's got the experience to identify when there is a serious need for a referral.
At any case relax and don't panic.
I used to photo my tongue too...but really enough with that

Re: Drowning in fear

PostPosted: August 17th, 2014, 2:39 am
by Sadface
That's what I guess I have to hope....that they know what they are looking for.
I wonder if dentists can spot atrophy, as I had an appointment recently and they didn't mention any concerns.

Re: Drowning in fear

PostPosted: August 17th, 2014, 11:32 am
by Sadface
Would you get frequent soar throats with als?

Re: Drowning in fear

PostPosted: August 17th, 2014, 11:41 am
by Sadface
Or it feeling soar after talking for long periods?

Re: Drowning in fear

PostPosted: August 17th, 2014, 12:11 pm
by TwitchyDoc
Amy, I told you via the PMs, your tongue "twitching" is not fasciculation, it is normal movement -stop the obsession!

Re: Drowning in fear

PostPosted: August 17th, 2014, 12:14 pm
by Sadface
I'm trying :-/
I've tried to move forward a little: I'm avoiding google and when I get the urge I distract myself.
Only been one day like!
Not quite stopped staring at it though

Re: Drowning in fear

PostPosted: August 18th, 2014, 2:45 am
by Sadface
Or feeling I have atrophy x