20 months in - going downhill fast

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20 months in - going downhill fast

Postby Nightfly on August 23rd, 2014, 12:05 pm

Hi All,

Been twitching now head to toe every few seconds for 20 months and always tried to stay positive using the posts of long timers and people with worse symptoms than me (managing it fine) for support.

But today I have just lost it!

I am currently having serious issues with my face neck and throat. Over the last few months I have had serious neck pain plus face and neck twitches and tremors – I also have a big problem with sensing a lump in my throat (and permanently having to clear it) as well as pain swallowing . A couple of days ago I saw an ENT specialist (primary doc thought it was acid reflux) who after videoing down my throat says it’s perfect. However, he did notice my tongue was bouncing all around the place (I had no idea it was doing it – and it has really freaked me out), and based on this he has referred me to Neurology.

My tongue is permanently on the go (literally across the tongue many times a second), and strangely it does not actually look like muscle twitches. It is more like the tongue is rippling or “popping” all across the width of the tongue many times a second. When I leave my tongue inside my mouth it’s not as bad but when the tongue is just popped out of the mouth, resting on the lip – it goes completely bonkers. I've looked at all the post and videos about the tongue but nothing seems like this at all.

I got pretty much relaxed with the other body wide stuff, but with the lump in the throat (3 months), the constant neck pain plus face and neck twitching/tremoring, added to this the permanent strange tongue movement, I'm starting to fear this is not benign after all.


I'm really down at the mo - just needed to get this out.
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Re: 20 months in - going downhill fast

Postby leaflea on August 23rd, 2014, 3:33 pm

Dear nightfly,

I am sorry you are going through this! I hate going to the doctor and they find some incidental thing. Please try to relax and put it ALL down to hyperactive nerves. This neuromuscular hyperactivity can manifest itself so differently from person to person, day to day, body region to body region. You do not mention any weakness, voice changes, or swallowing issues. Facial twitches are almost always benign and the globus sensation you describe in your throat is almost always anxiety (as are facial twitches). The tremoring is something I also have in my neck. Drives me crazy. If you haven't been to a neuro yet (you did not mention), think of this as a good thing. When you do, please report back to us. Pretty sure you will be reassured.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: 20 months in - going downhill fast

Postby Nightfly on August 23rd, 2014, 4:36 pm

Hi leaflea,

Many thanks for the reply. This is the first time Ive been worried enough to posted about my actual symptoms, just writing it down sort of helps.

Had an EMG 14 months ago on my limbs which was OK. I accepted the BFS diagnosis and just got on with life. Body-wide twitching has got progressively worse from then (but I still felt lucky compared to others on this forum). I don't have problems actually swallowing - just the "lump" feeling and a slight pain (as if I have a had a 3 month sore throat!). My voice has not changed either. I am however having a lot of pain from my neck. Needless to say I am hoping its all coincidence - Its just my tongue which has got me really anxious. If it was twitching then no problem (there are quite a few vids of benign twitching tongues). But this looks quite different.
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Re: 20 months in - going downhill fast

Postby Pascal35 on August 24th, 2014, 5:37 pm

Hi Nightfly,

Do you feel this movement of your tongue at rest?
Do you have any issues with your speech or chewing,eating etc? - Did the ENT see any atrophy?
It seems very strange but not really something you should be concerned of
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Re: 20 months in - going downhill fast

Postby Sadface on August 25th, 2014, 2:28 am

All of your symptoms same as me!
I'm currently having face neck twitches: annoying as on lips and chin and although others have said I don't have tongue twitches, I certainly feel them!
My tongue ripples when I stick it out a little. I thought that was normal as I'm sure my family members are the same.
I have a dent at the side of mine.

I too fear!!
I just wanted to highlight how your symptoms sound very me x
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Re: 20 months in - going downhill fast

Postby Nightfly on August 25th, 2014, 7:26 am

Hi Pascal35,

No I cannot feel my tongue movement - but currently I can eat and talk no problem. However swallowing is a bit painful (as if I had a sore throat) and I have localized muscle pain where I sense the "lump". The ENT Doctor who videoed my throat and stomach did not mention anything regarding atrophy - just that the throat and stomach were fine (I was actually referred to ENT for acid reflux). After putting a camera down the throat the doctor gave me a general examination. This was when he notice my tongue was on the go. I am now waiting for the appointment with Neurology to come through and the ENT Doctor has also arranged for a "barium Swallow" test to be done in the meantime.

I always knew this was a waiting game. The longer I went without something failing the less chance I had of having something nasty. I have been twitching body wide now for 20 months - mainly in the limbs (with hotspots that have been going on over a year). And although I twitch much more now than I use to do (every few seconds), after so long, and with so many of us having such similar experiences on this forum, I thought I was pretty much in the clear.

I now have my doubts.

Sadface,

After reading your posts I can certainly empathize with you. I know (as so many on this forum do) that its hard staying positive when you have so many problems.
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Re: 20 months in - going downhill fast

Postby Pascal35 on August 25th, 2014, 7:39 am

Hi Nightfly,

I also have acid reflux.
I was taking "Nexium" for some time (btw i read somewhere that Nexium possibly triggers twitches...) so i do believe that your feeling in the throat is coming from that.
Are you sure that your tongue wasn't making those movements always?
What i am doing with my tongue (like a tic) is i am bending it and play with it when i am stress. I guess the slight twitching might be a result of me doing it and creating an injury (i hope).
I guess for you 20 months is a pretty re-assuring period of time.

At any case what i do believe is that we have to fight with our fears...
Even if 20 months is a reassuring period (I'm only currently at 9 months) what will happen if worst symptoms start over after 2 or 3 years?
Again we will have to wait for another 10 months to be sure?
And then again the same and the same as we get older?
There is no end to that.
It is just a strong decision to forget about it and move on... Unfortunately i don't feel yet strong enough to do it!!!
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Re: 20 months in - going downhill fast

Postby Nightfly on August 25th, 2014, 11:47 am

Hi Pascal35,

You have good points.

I know there's a chance my tongue has always been like this (or at least for some time) as it's something I have never checked. And I also agree that any period of twitching is no guarantee that something nasty won't happen sometime down then line. However, the longer this has all been going on without complications, the more I was confident it was benign.

Regarding reflux. The ENT Doctor told me I did not have it and advised me to stop taking the PPI's I had been prescribed.

The neck/face twitching I can cope with as I have had my fair share everywhere around my body. It's the funny tongue movement and the lump in the throat/pain that won't go away bothers me. I know anxiety can fuel itself, and although on the whole I'm a pretty laid back guy I must admit I'm worried about this one, and like yourself find it hard to move on.

Can you feel your tongue twitching? (from what I gather that's actually better than not feeling it). What are your other symptoms?
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Re: 20 months in - going downhill fast

Postby Sadface on August 25th, 2014, 12:53 pm

I have both. Ones I feel with mouth shut. I also have the ones I see when looking in my mouth with torch but I can't feel them, just see them!
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Re: 20 months in - going downhill fast

Postby Nightfly on August 25th, 2014, 1:38 pm

Hi Sadface (love the name!)

How long have you had this?
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Re: 20 months in - going downhill fast

Postby Sadface on August 25th, 2014, 2:19 pm

Well I've had it 3 months that I am aware of (tongue issues,) but had widespread ones for 12months!
If u see my previous posts I've had quite a few tongue issues!
I find my tongue feels weird and I always bite the inside of my mouth!
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Re: 20 months in - going downhill fast

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