Tongue Fasciculations

[Secretariat190]

I've had a lot of symptoms for the past 3 years, and a very "strange" and scary severe "episode" three years ago and then again a few months ago, with just slight impairment (in lots of ways, too much to go into here) in between the three years.

Have been having lots of tests, and last week modified barium swallow diagnosed "Mild Pharyngeal Dysphasia, Lingual Deviation, Tongue Fasciculations" and I'm being sent to a new neurologist (last one told me "do yoga" and said nothing about my tongue or its deviation? he did set me up to EMG next month, but did not say why).

I don't feel like it can be ALS because some days are much worse than others, and my fatigue comes and goes, as do my more severe symptoms. The tongue stuff stays at the diagnosed level as a standard, and then on "bad days/weeks/months" gets worse.

Wondering what you all think.

Thanks so much for reading and for any comments.

 

[laurel]

Secretariat it would be very hard for us to speculate. Wait for the EMG, and in the mean time write out a list of symptoms and questions for the neurologist next month. Take some notes at the appt. so you remember what he/she responds. Best of luck to you.

Laurel

 

[Secretariat190]

Thank you, Laurel. Very good advice. I've got long lists of symptoms as well as a long medical history with records. I'm very tired of not having a "real diagnosis" of one kind or another. So in a way, I guess that also makes me feel like it cannot be ALS, as from what I've read and know from a friend who had ALS, it is *obvious* in a very short amount of time and I've just been in limbo land for nearly 4 years.

It's not that I "want" to be sick but that I do have a myriad of little things that are exhausting to deal with on a daily basis as well as very scary breathing problems that come and go and I'm tired of not knowing why and tired of my so-called friends thinking I'm crazy. This swallow study finally gives me credibility at different doctors because being told I have "anxiety" or to "take deep breaths" is so annoying when you can't lay down and breathe and swallow all at the same time sometimes?

Will write after the EMG. I honestly have no idea what that will show, i.e. i really don't have any intuition about what it will show. i do know something is wrong that is neurological in nature, but i honestly don't know what.

Thank you again.

 

[laurel]

You are most welcome. Make sure you let us know how the appt goes. So many people ask questions and disappear and we never get the good news.

Laurel

 

[Secretariat190]

Thanks, and I will.