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Chicklette

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Hello everyone,

I've been lurking for a while, but never felt a need to sign up until recently. Let me tell you a little bit about myself. I am a 37 year old happily married mother of two teenage boys. Around May / June of this year, I was rinsing my mouth with mouthwash and when I spit it out, I had my tongue hanging out and noticed a twitch on the right side. I decided since I had no other symptoms, to just ignore it. The tongue twitch is there 24/7 and is still there today. Well, around the middle of August, I started to have slight problems swallowing liquids. I wouldn't choke right away, but would need to clear my throat or slightly cough within a few seconds. I went into a panic and lost over 20 pounds in a month from not being able to eat due to anxiety. I also developed body wide twitching. I went to my PCP and have a swallowing study scheduled for next Friday. In the meantime, I had a referral to a neurologist. They did an exam and found the following. They saw the tongue twitch which is in one spot on the right side of my tongue, I have very brisk reflexes all over with two beats of clonus in the ankles. I have a brisk gag reflex (although this didn't make sense to me because I didn't actually gag when she tested it). I had negative babinski and Hoffmans. I have what appears to be atrophy in my right hand and my right calf is slightly smaller than my left, but I am so sickly thin it was not confirmed as atrophy. I get tired very easily ... Arms and legs quickly fatigue.

I had a lot of blood drawn and am now waiting for a call back from the hospital to schedule my CT scan and EMG. I am so scared right now. I'm trying to keep a positive attitude, but it's so difficult to do so when I am so scared. :-?

I appreciate any advice, input or words of encouragement.

Thank you and God bless
Chicklette
 
Forgot to mention that when the Resident Neuro tested my right leg, he jumped and said "Whoa! Is that normal for you?!?" I said that I didn't know, although I don't think it is ... :-/
 
You haven't actually said what the PCP or neurologist are thinking, just that you are in a very anxious state and going to doctors.

You need to sit back, calm down and let them run their tests. Nothing sounds like ALS to me so far, and they will be looking for far more common and treatable reasons for your symptoms, and you can't rule our anxiety. You have lost all that weight by being anxious.

Most people with ALS are not anxious until after they receive the diagnosis! Most of us spent a long time getting to there. For my husband it took 9 months after serious symptoms began and I can assure you his symptoms progressed a lot during that time.

Stay off here, go through the testing time and come back if you get the highly unlikely diagnosis. Just the fact you've been lurking here for months is a sign of high anxiety.

I sincerely wish you all the best sorting your health issues out.
 
Thank you for your reply, Tillie. I really do respect your advice. I will try to stay away ... it's always Dr. Google that leads me here ... Haha. (And as we all know, Dr. Google is evil and I need to stay away from him, too). It's ironic that when I was trying to sum up everything in my message, I thought I sounded silly and paranoid...I suppose I probably am. That is really what I am hoping, anyway. The neurologist didn't really say what she was thinking. I did say that I am afraid of "the big bad one" and she said, "Well, that's why we need to do all of these tests..." So, I'm left wondering what they are thinking. What scares me is the combination of the confirmed tongue fasciculations with the swallowing difficulties and brisk gag reflex along with the hyperreflexia with clonus. My PCP put me on some anti anxiety medication and it is starting to help, too. Again, thank you for the advice and well wishes. I'm going to try to relax and take things one day at a time. :)
 
My reply went to moderation, but I want to say thank you for replying.
 
I hope you can stay away, it's the best thing for you.

My husband had bulbar onset ALS, and I can tell you that you are interpreting what is happening to you against what you read online. The bulbar fasciculations of the tongue and the swallowing issues are not how you describe them. This is anxiety - you read one thing and fear that what you are experiencing equals those things. The reality of how these present is very different.

We don't try to describe them here, it only makes anxious people fear they are now experiencing that. But we can read what you describe and know it is very different to ALS.

All the best (your reply came out of mod quickly)
 
Just to follow up for anyone who may be curious or have similar symptoms ... I had my EMG and nerve conduction tests today and they were clean. Yay! Since I still have very brisk reflexes and clonus, the doctor still believes there may be something going on so I have an MRI (with and w/o contrast) scheduled for tomorrow and a swallow study scheduled for this afternoon. Neuro wants to do a follow-up EMG in three months, but from what I have read, that seems to be a pretty standard request. Thank you to all of the PALS and CALS for putting up with those of us with health anxiety.
 
I should clarify that I meant "something going on, but probably not an MND" ... I'm going with the "Clean EMG = NO ALS"
 
I should clarify that I meant "something going on, but probably not an MND" ... I'm going with the "Clean EMG = NO ALS"

Smart woman.
 
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