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It's been awhile...advice needed...

PostPosted: October 1st, 2015, 11:07 am
by Neville86
Yes, I am looking for reassurance, but, a different kind. I want (and have tried--leaving this wonderful group six or seven times only to return with suitcase in hand) to do the impossible: I want to move on from BFS. There are days where I get glimpses of it, but ultimately it's still mostly what I think about all day, everyday. So, as you all know, I have a tongue fasciculation that's going most times I go looking for it, in the same spot--left side of tongue. I have had it now for 15 months as of today. It varies in its intensity (honestly seems to increase with fatigue/strength testing),but it's always there, and if for some reason it isn't, I can induce it easily enough by stretching my tongue. That being said, i was having a rough morning and looked through e-mails from my neurologist's office and decided to actually read them. I signed up for the "patient portal" and found this, the impressions of my visit 6 months into this thing (so, 9 months ago). At this visit she performed an EMG on just my tongue. I did go back to see her at the year mark (6 months later), but we did not discuss tongue stuff, just body--and she performed a clinical and did an EMG on my right arm where I was having constant fasciculations. Anyway, below are her impressions. Please, read them and then I have a v. serious question (sorry for the long preamble and thank you for your time):
"This is a 28-year old man who has noticed fasciculations in his tongue. He occasionally notices difficulty in his speech. He is worried that perhaps he has ALS. He denies weight loss, dysphagia, and peripheral weakness. On exam he is alert and cooperative and provides a good history. The quality of his speech is normal. Tongue strength is normal. He does have an occasional fasciculation in his tongue. Reflexes are one and symmetric and his gait is normal. Peripheral strength is normal. Impression: his general neurological exam is normal. EMG of the tongue is also normal. I reassured him that his fasciculations are benign. There is no clinical or electrophysiological evidence of ALS. --Sara Austin MD, American Board of Electrodiagnostic Medicine, American Board of Psychiatry and Neurology with Certification in Neuromuscular Medicine"
Below these impressions are the EMG results.
So, as mentioned above, I want to move on from BFS, but, like most of you, find it difficult, because it is a condition of variation and longevity of symptoms, which leads to doubt and more anxiety. I realize that most *normal* non-HA sufferers would have gone to her, got the results and moved on. But here I am, almost a year later and not any better. It has been suggested that I see her *one last time*, but I wonder what new information I can tell her. The tongue fasciculation still exists, I have experienced a myriad of symptoms over the course of the year, but really, I wonder what else could be done? Another EMG of my tongue? If the findings are negative could I really let this go?

Re: It's been awhile...advice needed...

PostPosted: October 1st, 2015, 12:25 pm
by Yuliasir
hi,
the answer is in your own message: because it is a condition of variation and longevity of symptoms, you can forget about MND.

MND usually have a very specific set of symptomes and they tend to become more prominent quickly and usually neurological deficte does not wait for long time to appear.

As you do not have deficiete after 15 months of non-stop fasciculations (no speech imapirment, no reflex changes etc.) - you may consider variations and longevity of symptomes as a good and reassuring sign.

Re: It's been awhile...advice needed...

PostPosted: October 1st, 2015, 12:30 pm
by Neville86
Thank you, Yulisar for your response.


This fasciculation in my tongue hasn't let up which is what scares me. It's a twitch similar to that twitcherhh showed in his video.

I hate this *beep*.

Re: It's been awhile...advice needed...

PostPosted: October 1st, 2015, 6:57 pm
by misterjuanperalta
Reponse retracted.

Re: It's been awhile...advice needed...

PostPosted: October 1st, 2015, 9:00 pm
by Neville86
You can?

Like what?