Status
Not open for further replies.

Baileygirl80

Active member
Joined
Aug 6, 2013
Messages
41
Country
US
State
Mn
City
Lindstrom
I'm not sure how to start a thread, he wants me to have a brain MRI and another emg, he said als is possible and he is very worried about my little bit of twitching on one spot on my tongue
 

Baileygirl80

Active member
Joined
Aug 6, 2013
Messages
41
Country
US
State
Mn
City
Lindstrom
Yes I did, ask, he said three things he thinks it is, either ms, Lymes or als
 

Grateful

Distinguished member
Joined
May 11, 2012
Messages
302
Reason
Learn about ALS
Country
Uk
State
Greater London
City
London
Baileygirl80

It is also possible that it is a virus; a close family member had symptoms like yours and after very comprehensive testing- including spending more than a week in hospital- the doctors concluded that it was a viral infection. Twitching tongues are very scary but they do not inevitably mean that you have a very serious, incurable disease.

Did the doctor even mention the possibility of a virus?
 

Baileygirl80

Active member
Joined
Aug 6, 2013
Messages
41
Country
US
State
Mn
City
Lindstrom
He did mention a virus could have caused damage, at some point, but this has been going on since last march, it went from march till like June, then it stopped and was gone for 6 months then it came back and has been kinda on and off since December.
 

Grateful

Distinguished member
Joined
May 11, 2012
Messages
302
Reason
Learn about ALS
Country
Uk
State
Greater London
City
London
Baileygirl80

Again, from the personal experience of a close family member, symptoms can go away and come back just when you think you are rid of them; at the moment, after almost 18 months, we are hoping it has finally cleared up but the doctors have said that it could take longer for it to depart permanently!

I'm keeping my fingers crossed your problems have been caused by a similar virus and that it will also go away permanently in the near future!
 

Debd4l

Active member
Joined
Mar 8, 2013
Messages
68
Reason
Learn about ALS
Country
US
State
WI
City
Madison
Yep, just want to reiterate what Grateful suggested about possibly being the virus. My diagnosis is actually Post Viral Fatigue Syndrome/ME by my neuro since my EMG and clinical did not show any indication of MND. I have had twitching etc for almost 7 months now with one month of improvement in there..
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Rickson, maybe this will help you, my PALS has bulbar issues (actually had shoulder muscle wastage not realised to be a problem well before, but the bulbar onset was what caused us to seek medical help)

The first thing he noticed was he couldn't whistle.
Then that when drinking cold liquids, they would hit the back of his throat and spray out of his mouth.
Then that if there was any cold breeze, even on a hot day his teeth would chatter uncontrollably.
Then slurring of speech started, just a bit, just now and then.
Then teeth grinding at night, constantly biting his cheeks day and night.
Became sensitive to cold/hot, sweet/sour - and he had an iron mouth before this.
Slurring became worse.
Lip seal began to weaken.
Swallowing fluids became worse.
Started aspirating especially if he laughed.
Tongue covered completely in fascilations.
Began having real swallowing issues, and has to eat and drink very slowly and carefully to avoid choking/aspirating.

All this developed over a period of 6 months, and still we had no diagnosis, were being constantly seen by ENT and Facio-maxillary specialists.

So, your questions are valid - I believe my PALS has had a pretty typical bulbar onset, though it is certainly not the same for everyone there are always some variations. Being someone who whistled a lot he noticed that early.

It is not just the tongue that is affected, all his facial muscles are affected, his palate too.

Although in the first months his speech slurring did come and go, and some symptoms were not there all the time - he could drink a glass of water ok sometimes, but then he had to concentrate, if he didn't whoops! He never got better, the symptoms never went away, they continued over time to decline.

Most bulbar onset have far more problems with fluids than food, but I will say again, it will continue to get worse, not stay the same and not get better.

I hope that helps you to understand bulbar onset.

It was a speech pathologist who honed in on exactly what was happening for my PALS and got us to a good neurologist.
 
Status
Not open for further replies.
Top