Understanding Myself in January

[Henrik52]

Just as I was understanding myself....

January '03 I started twitching in my eyes, then my legs, then one of the muscles in my face. Saw the doctor, he ran a couple of blood tests and didn't see anything and referred me to a neuro.

Neuro saw me in the beginning of February, took one look at me and said, "I think you're fine." Did the usual initial strength tests that everyone seems to get, didn't find anything, but scheduled me for an EMG just in case.

Came back a week later for the EMG, and I had mostly stopped twitching. He said, "It's almost certainly BFS." Wrote it out for me so I could do my own research. Didn't even bother doing the EMG.

Two days later, I started getting terrible cramps in my legs that moved up to my back and neck and hands. Called the neuro back, he still wasn't concerned, but I pushed him to do the EMG.

Had the EMG done in March, it showed NOTHING. No fasics, no nothing. He said, "Well, it's not ALS, but I want to refer you to another doctor just in case..." By the time I got the cc of the referral letter, it was now April and I was barely twitching, and no cramps. So, I didn't follow up, since I never got a call about an appt. Note, here, that I have never had ANY twitching in a doctor's office. It just GOES AWAY as soon as I walk in the door.

A bit of a recurrence on April 15th. Yes, I sort of let my blood pressure go up that day. Took two-three weeks to die back down.

Over the next year, barely ANY twitching, but I did get diagnosed with GERD and IBS. Taking Nexium now for the GERD.

This January (just about 1 year to the day after first symptoms), it came back. Not nearly as intense, but cramps, twitching, it's all there. I waited it out, and in the usual 2-3 weeks, it passed. However, just as it passed, I started getting a tingling in my tongue, and I FEEL like I'm slurring words sometimes. As in, I haven't noticed anyone saying, "What did you say?" more often, and no one's commented that I'm talking funny. It peaked earlier this week, where it felt like I could barely push the words out of my mouth. Doesn't feel like that now, but my tongue tingles some of the time, and I feel like I'm slurring the odd word now and then. Sometimes more, sometimes less. Seems to be worse if I'm excited, or have just had something cold to drink. Also, I got REALLY bad about taking the Nexium every day, and the heartburn started to come back. I've dealt with that (mostly), but only got back on it faithfully this week.

So, needless to say, like everyone who feels something in the tongue, I'm a bit panicked. I have no weakness in my lower body. Clean EMG 2.5 months into twitching. My hands do feel weak when they're cramped, but as the cramps pass, the strength returns completely. I wouldn't say my tongue does NOT fasiculate, but I haven't felt it twitch on it's own. Sometimes I put my finger against it and feel the odd one-off twitch.

Should I see the neuro again over this tongue thing? If it's the first thing to go, that would suggest bulbar onset, but bulbar onset after a YEAR of twitching and cramping everywhere else?

I know some other people have experiences with this tongue thing here, so was looking for some opinions.

 

[JCVanilla4125]

Hi Henrik,

Your symptoms are very similar to mine in regard to your tongue. The feeling of slurring a word, the sensation of having to push words out and the worsening with cold drinks (or ice cream). I have all of it except the tingling. It comes and goes and can be frustrating. I doubt you have anything to worry about. A clean EMG at 2.5 months and a year without progression rules out ALS. The tongue is a mucle just like any other and it can twitch as well as the rest. As you know by now, anxiety only makes things worse, so try to ignore it as best you can and it will stop when it wants to. Good Luck!

 

[arizaz2021]

Henrick-

Yup, I have the tongue thing, a little different than what you and Joe posted. Mine feels sort of heavy in my mouth and the sublingual glands, the ones directly under the tongue, feel like something has been injected into them to make them"puffy". I went through a few weeks of where certain sounds were difficult to say, like the "tion" on the ends of certain words. Noone else noticed it, but I became so self-conscience that I would pre-think my wording before I would speak to anyone, just to avoid hearing myself stumble. That passed. However, I only get short windows where the tongue feels normal. Mine twitches, sometimes off and on all day, sometimes, like you, only when it is touched or after brushing my teeth.
I have consulted an ENT, he saw the twitching but couldn't feel any changes in the glands, and felt the tongue looked normal. So, if they can't see/feel the problem, I guess it doesn't exist My dentist suggested seeing a oral surgeon since they know the anatomy of the mouth more in depth as well.

I am convinced that those of us with BFS could keep a fleet of doctors in business, as I don't think most of them don't view this with any degree of understanding. If the medical community isn't concerned, at large, we are simply left to sort out our symptoms.

Anyways, I probably am no real "help" to you, but I can sympathize. I have yet to read about anyone else feeling that "thick" tongue and glandular experience, would love to have some comisseration.

Take care and keep us posted.

ariza_z2021

 

[arizaz2021]

Henrik-

If your doctor did and EMG and it was clear, why did he refer you to another doctor, "just in case..."? It seems like it is so clear-cut with those on the forum that one clean EMG is enough. Just wondering if you meant just in case it was something else.

ariza_z2021

 

[Henrik52]

Well, I don't think the second doctor would have been looking for ALS. I'm sure there are plenty of other less scary diseases. BFS is a process of elimination, as been said here, that must be diagnosed after testing for several. However, if I'm basically symtom free, I'm going to try not to worry.