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Re: Hyperexcitability phase

PostPosted: February 23rd, 2015, 3:09 pm
by joycecaroll
Wen't do a GP today. Fresh from med school. She gave me clinical and said it was ok, but she clearly saw twitches on my tonuge. She got worried and referred me to a neuro. Again. Said it might take a few months before I get an appt. I asked her what she saw, if it really was fasciculations. She said she saw twitches. Now I'm so scared. I thought I just had them when I felt them, but now I'm thinking I have them all the time and don't feel them.

Re: Hyperexcitability phase

PostPosted: February 23rd, 2015, 4:34 pm
by garym
joycecaroll wrote:Wen't do a GP today. Fresh from med school. She gave me clinical and said it was ok, but she clearly saw twitches on my tonuge. She got worried and referred me to a neuro. Again. Said it might take a few months before I get an appt. I asked her what she saw, if it really was fasciculations. She said she saw twitches. Now I'm so scared. I thought I just had them when I felt them, but now I'm thinking I have them all the time and don't feel them.


how does this scare you? you twitch, and just because some fresh from med school doc observed them in your tongue, and you couldn't feel them, doesn't make it any more worrisome. I don't feel 50% of my twitches these days, but they are ALWAYS there when i look....nothing to worry about.

Gary

Re: Hyperexcitability phase

PostPosted: February 23rd, 2015, 11:33 pm
by Ghayes420
I completely agree with Gary. My GP doesn't even know what BFS is. I educated him along with several other doctors along the way.

Your tongue is a muscle, it will twitch if you have BFS at some point if you know it or not.

You may have actual tongue fasciculations or spasms. Big deal. If they were picked up on an EMG I may be impressed. What an actual trained neuro is looking for is visible fibrillations on your tongue. Its the only muscle where fibrillations are visible. Don't ask me what they look like, only a trained professional can answer that. You most likely do not have that. It is very, very rare.

What I can tell you is that the fascics and twitching on your tongue is what has been described here by numerous other folks with BFS.

Re: Hyperexcitability phase

PostPosted: February 26th, 2015, 3:02 am
by joycecaroll
Thank you guys.

For the last couple of days my voice has been cracking a lot and I'm clearing my throat all the time. Freaks me out. What is hoarseness like in ALS? I don't have a cold or anything.

Re: Hyperexcitability phase

PostPosted: February 26th, 2015, 3:29 am
by TwitchyDoc
Joyce, you can always go to an ENT and get it checked. The hoarseness in ALS usually results from pooling of the saliva and/or food remains in the piriform recesses and the subsequent overflowing into the vocal chords. An ENT doctor can evaluate these recesses along with vocal cord movement and can tell you immediately if there is something wrong.
I am sure he will not find anything.

Re: Hyperexcitability phase

PostPosted: February 26th, 2015, 3:34 am
by joycecaroll
I have an appt with a neuro in a few weeks, and I'll probably get an emg as well. So I think I'll just hang on untill then. The hoarsness is very, very mild. Would probably not notice it if I wasn't obsessing.

The way you describe the hoarsness I get the feeling it's associated with swallowing difficulties? Don't have that.

Re: Hyperexcitability phase

PostPosted: February 26th, 2015, 3:45 am
by TwitchyDoc
Throat clearing is a very non-specific symptom, associated with many conditions (allergies, post-nasal drip....). In ALS, it represents the subclinical swallowing impairment, typically caused by the base of the tongue weakness and lodging secretions in the piriform recesses.
I would say you are just hyper-sensitive and your voice is normal, affected only by anxiety.
Swallowing issues are uncommon as a first symptom of bulbar ALS (only in 1 out of 8 patients), dysartria is. Typically, dysartria parallels dysphagia.
I think your doctor is being responsible when she sends you for an EMG beacuse of tongue fasciculations but I do suspect you have tongue tremor and your GP just confused that for fasciculation based on your history. You would not be the first one here, I remember another case where GP said fasciculations but neuro disagreed.

Re: Hyperexcitability phase

PostPosted: February 26th, 2015, 3:48 am
by joycecaroll
It can't be a tremor. a tremor involves the whole surface of the tongue. This is twitches in sinlge spots. I have gone days without noticing any at all though.

Re: Hyperexcitability phase

PostPosted: February 26th, 2015, 4:04 am
by TwitchyDoc
Not really, contraction-induced tremor can affect as few as one motor unit - you can see it when flexing your tongue very gently as you will see certain spots to twitch. Even if was fasciculaion, you said you can go days without noticing any. That would not happen with lower motor neuron lesion. There would be present all the time (sometimes less, sometimes more) but they would not go away.

Re: Hyperexcitability phase

PostPosted: March 4th, 2015, 9:19 am
by joycecaroll
Help me with this please? I have an appt. with my neuro in a week, and in 2 weeks I have a EMG. I'm so nervous. On one hand I'm scared they'll find something, on the other I'm scared I won't be able to relax even if they don't.

It's been 6 months since I started having fasciculations on my tongue. Is that enough? I read somewhere you're suppoused to wait 8 months. If the EMG and clinical is clear, is it safe to let this go then?

I really need suppourt right now. I'm so scared I don't even know if I can go through with it. Oh, and I'm starting an internship at a neurology unit next week. The irony.

Re: Hyperexcitability phase

PostPosted: March 10th, 2015, 4:24 am
by joycecaroll
I need help. I've tried to drink liquid and blow my nose several times, and nothing showes. However, after I've been drinking coffee and I "sniff" with my nose, I can feel something running back in my mouth. If I spit it out it's brown (or some other color if I've been drinking something else). Is this normal? It means some of the liquid does enter my nose.

Re: Hyperexcitability phase

PostPosted: March 10th, 2015, 6:41 am
by Yuliasir
if you spit after drinking coffee, it is normal that there is some coffee in your throat and it does not mean you have weak soft palate.

Re: Hyperexcitability phase

PostPosted: March 10th, 2015, 8:28 am
by joycecaroll
It's not brown unless I'm sniffing my nose before.

Re: Hyperexcitability phase

PostPosted: March 10th, 2015, 9:21 pm
by jcmommie
I think an ENT consult may ease your mind even more than an EMG. Like others have said, they can closely inspect everything and will find any abnormalities. I had this panicking fear, btw, 6 years ago. Lost 40 lbs. convincing myself I couldn't swallow.I had a globus sensation & had a swallow study done. Perfectly normal except a delay of swallowing the bolus to begin with, which was anxiety-driven. Really, this all sounds so familiar to me. Anxiety. Also had tongue fasics on the left side. Still do, 6 yrs later if I look really hard for them. The best advice I ever received was from a doc at a MND clinic. She told me to stop looking. Even brushing my teeth, just close my eyes. That really helped break the OCD cycle.

Hang in there!

Re: Hyperexcitability phase

PostPosted: March 12th, 2015, 5:19 am
by joycecaroll
Thank you, very good post.

I went to my neuro yesterday for a check up. He checked my jaw jerk and it was not brisk at all. He didn't see any fasciculations either. He's sending my for an EMG next week. If that EMG is clean, surely I can relax then? It's 6 months after fasciculation onset. I read somewhere that bulbar sometimes doesn't show on an EMG. I read it in a paper called Mimics and cameleonts in MND. I'm sure I missunderstood it somehow, but could someone explain?