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PostPosted: January 8th, 2016, 8:55 pm
by Scaredlin
Hi, if youve been watching the board you can see my anxiety has pretty much dominated the board throughout the holiday season. Im a 2 yr veteran. Had a clean EMG and bulbar EMG at the beginning of this nightmare.

I am "throat" girl - not a nice name, I know

I do twitch, but my main issues are all sorts of weird cranial sensations/spasms/tingling/burning in my throat, mouth, roof of mouth, tonsils, etc. Sore throat all the time but not when swallowing. Its weird. And hurts after I talk alot. I used to have the burning muscle body stuff but that resolved

Anyway, I was a total loon over the holidays with muscle cramping in my throat and a tickle in my throat that of course I read was common with you know what. I was able to get a full body EMG done before thanksgiving but insurance would not cover the bulbar b/c my neuro didn't really write up a convincing referral for it (didnt think I needed it). I literally had myself in a frenzy, crying that I wasn't getting to see my kids grow up, etc. It was a mess. I don't think mess even covers it. The holidays were a disaster and I actually took a leave of absence from work for two months. All of this even knowing that I've had these symptoms for two years and bulbar would have taken its toll on me already. After New Years I finally found a neuro who would write the script for a bulbar EMG, and when he couldnt do it right away, I got the quickest apptmt I could somewhere else at a large hospital with a different doctor. I lost 10 lbs on a tiny frame (120) during this horrible, frenetic worrying process.

This is a warning to all. Don't go down this road. I plunked down the money outright to pay for the bulbar emg that insurance denied. Good, hard earned lots and lots and lots of money that could have gone for a vacation or decorating a room or fed a lot of poor people for an EMG that took about 5 minutes because of this outrageous mental disease that we have characterized by our inability to let it go. Of course the EMG was totally clean and then I asked him if a bulbar covered my vocal cords bc maybe its in there and not my tongue or throat and he said "don't you EVER let anyone stick you with an EMG needle in a vocal chord." Moreover, even before he did the EMG, he said there is no way in hell you have it you aren't even remotely in the ballpark symptomatically at all.

Of course as these things go, I would love to know whats causing this hell in my throat. Ive been scoped by an ENT 4 times and Im not really a GERD girl so now Im worrying that some other neuro disease is atrophying my throat because of weird throat sleep issues and the sudden development of obstructive sleep apnea.

I can't live like this anymore. Its always onto something else. I have an appointment with a cranial neurologist in two weeks. Now thats at least a sensible start and it doesn't scare me at all. Its a rationale choice and no fear attached. It has been suggested that what I am feeling is some type of throat neuralgia (I did have open heart surgery where the ventilator was literally ripped out of my throat seven years ago, resulting in another operation to fix my vocal chords later on, so that darn well can be it).

Anyway, its great news and I can't thank God enough, but for me always tempered by whats lurking around the corner. Im working with someone on changing that.

Believe your neuros. Stop googling. Enjoy life. If "throat girl" doesnt have bulbar, you sure as hell don't!

Re: UPDATE: Bulbar EMG

PostPosted: January 8th, 2016, 9:47 pm
by Scboy
Glad it went well. As I recall this same panic happened around the holidays before. Maybe stress related.
I had a similar experience at the height of my ALS freak out period two years ago.I was getting an EMG at Emory and I was having breathing trouble. I asked the doctor to EMG the diaphragm. She looked at me like I was some kind of be of nut job. She said I'm not sticking a needle in your diaphragm.

Hope you find peace.

Re: UPDATE: Bulbar EMG

PostPosted: January 9th, 2016, 3:42 am
by Yuliasir
good to hear :)

Re: UPDATE: Bulbar EMG

PostPosted: January 9th, 2016, 5:47 pm
by Bibi
Thank You for sharing ! I also have throath issues . And i feel it is progressing. I have a hiatal Hernie and gatritis and have eaten pantoprazole since september . Now i feel there is spasms in my throath , a gurgling Sound and today i had pain When i swallowed some Bread. I also have feeling of liquids going into my nose , i always have to Blow my nose after eating. i have a very dry mouth and burning tounge . I saw an ent but he could not se any signs of acid reflux .. I also have pain in my feet and legs , When i raise from a chair my legs are stiff and hurt. I have an appointment in june with an Als specialist , but i dont know what to do now , i am very scared .

Re: UPDATE: Bulbar EMG

PostPosted: January 10th, 2016, 12:56 pm
by Scaredlin
Bibi. LIsten to me. You are OK. You have been on this board with these symptoms since May 2014. That is over a year and a half. I know its uncomfortable and upsetting, but you have a hernia and gastritis which can ABSOLUTELY account for the throat spasms without a doubt. Believe it or not, even after Friday's EMG, today I googled bulbar!!!! I am afraid that perhaps its in my vocal cords! Ridiculous! Completely ridiculous. (Besides I don't have shortness of breath, which is a symptom of vocal chord paralysis, plus it would have shown up in emg), but because I have pain when speaking, I am still unconvinced on some level. Its a SICKNESS.

Hear me out - the dr laughed at my symptoms because they included pain. So do yours. I also blow my nose a lot after meals. Its been a long long time. It would have proven itself by now in both of us. Please do not ruin the next 6 months of your life.

Re: UPDATE: Bulbar EMG

PostPosted: January 11th, 2016, 3:36 am
by leroyb
The notion that pain or sensory symptoms is not part of ALS is rubbish and any doctor who tells you otherwise is an idiot. ALS is not one disease but hundreds so there are some types that will cause neuropathic pain
and others that won't. Try telling someone with UMN ALS it's not painful. Musculoskeletal pain is common to all types. How doctors think your muscles can weaken and not cause pain is beyond me. Ever go to a physio with a sore joint or back and they tell you its' caused by muscle weakness?

I'm not trying to wind you up - neither of you have ALS and that is obvious - but there are so many wrong things stated as fact about ALS.

Re: UPDATE: Bulbar EMG

PostPosted: January 11th, 2016, 6:31 pm
by Scaredlin
I have heard that most of the pain associated with it is post diagnosis or later stages, but I understand your point.

Re: UPDATE: Bulbar EMG

PostPosted: January 12th, 2016, 4:10 am
by leroyb
The problem with pain is it has a million more likely causes than mnd so it's no use for a diagnosis which maybe is why it is overlooked.