NP worried about tongue

[minions09]

Went to the neurologist for a second opinion. She did the stand in tip toes and heels and checked my reflexes which was all fine. I've been twitching body wide since September. She had me open my mouth and said "wow, your tounge doesn't stop twitching and moving does it"? I am scheduled for an EMG the end of March. But now I'm worried like crazy. No muscle weakness and no slurring of words. I do have swollowing issues every once in a while where it feels like food gets stuck but I drink water and it goes away. I also have this breath thing when I lay down where I'm breathing normally and my body takes in an extra breath when I'm breathing in. Kind of like a double breath. Does any of this sound like it's heading to the als route?

 

[Atsugi]

Sounds like stress or anxiety. Follow your doctor's lead.

Minions, I've re-read all your posts and still don't see any reason to worry about ALS. All the previous advice still applies.

If I were you, I'd go down to the park in Fairhaven and appreciate the beauty of the bay. That might cure a lot.

 

[minions09]

Thank you! Every time I try and think of BFS, something new pops up. After this EMG, I'm praying its normal and I can go live my life with my twitches and enjoy them

 

[minions09]

Very high creatine kinase levels!!!!

Just got my blood tests back, normal is 29-143 and mine is 2987!!! Along with constant muscle twitching I'm SOOOO worried right now! Follow up isn't until end of March. Anyone help with advice?

 

[minions09]

Re: Very high creatine kinase levels!!!!

And it was tested in October and my level was 48. Such a huge jump in only a few months!

 

[lgelb]

1) One not-diagnosed thread to a customer, please. I have consolidated your posts this time.

2) The higher your CK in this context, the more likely you have myopathy or another non-neurogenic disorder, which is good. I'm confident the EMG will point away from ALS, so enjoy our stormy pre-spring and perhaps take an opportunity to volunteer somewhere that your good cheer could benefit the less fortunate/mobile.

Best,
Laurie

 

[minions09]

Doctors office called. They are ordering a ton of blood work today and putting a stat order on them and bumped me for an EMG for tomorrow! I guess I will know then. I'm so worried! Muscular dystrophy was listed as the number one cause for why it would be SO elevated. Then heart attack and brain infection. Has anyone has elevated creatine kinaste and had a normal EMG?

 

[minions09]

Just came back from appointment. CK levels went from 3,000 on Monday to 650 on Tuesday. He is still a little concerned by that and wants me to come back in 2 weeks to retest. He also did EMG on one of my legs and said it looked goood and didn't want to look any farther. Ncv he said was fine too. He thinks it's BCF/BFS. So that's good news, just need to find out why my CK is still pretty high.

 

[minions09]

650 on Wednesday, not Tuesday

 

[affected]

That's great. I hope you can now move on from here and just work with your doctor as coming here will not help BCF/BFS and we can't help with that condition.

All the best, I'm very happy for your clear EMG

 

[minions09]

Thank you! Yes, I'm twitching my way over to the BFS group.

 

[minions09]

Bulbar onset

Can bulbar onset start with muscle twitching body wide and clean EMG on legs? Then have breathing and swollowing problems with no atrophy on muscles or weakness? So basically body wide twitching including tongue, occasional food stuck in throat and need water to take it down, and breathing problems as in can't get enough air in Kings feeling. Like you take a breath in, and your body takes an extra breath in for you and breath out normally.

 

[minions09]

I would love to hear your opinion on the CK. I have read that extremes CK points to mnd and slightly elevated pints to ALS. Is it possible in mnd or als to go from 3,000 to 650 in 3 days and have no weakness or atrophy? Could it maybe point to Bulbur then? I want to be as informed as I can going back to the doctor. So any information would be great. No weakness but breathing in and body taking an extra breath while breathing in. It's like my chest needs more air then what I breath in. Kind of like a double breath.