by TwitchyDoc on August 23rd, 2019, 4:28 am
Raindow, I am sorry to hear that...lets see what the results will say.
veryworried123: What your neuro told you (at least 5 years of monitoring) is what I mentioend here several years ago, and immediately I was called names, attacked, ridiculed...and I get it, people used to come here to get reassurance, regardless of whether it is true or not, and they get aggresive if you contradict them. It is like arguing with people who believe in God or anything supernatual, they cling to belief, despite the facts, because it offers consolation.
On the other hand, I have known only a few patients with "BFS" turning into MND after 5+ years and in most cases, it was different from the typical BFS here. The last patient I spoke to had intermittent fasciculations in his left arm since 1997, nowhere else. They waxed and waned for years, EMG was clear. Later, he started getting fasciculations on his left side. Around 2005, his left arm (where the fasciculations appeard initiatelly), started to weaken and then it was a classical progression of MND.
He had no widespread twitching, no sensory stuff, nothing. You can see it is different from BFS as we know it. But as this happens from time to time, neurologists are now advised to follow up on these patients and they do not really distinguish between the pattern of fasciculations.
I know many more BFS sufferers who are OK after more than a decade. Myself, more than 12 years, tongue fasciculations included.
As for the literature, that is only half-true - it is not uncommon to encounter a condition that is still unknown, we call it syndromes, and some might be phenotype specific and will thus never be described.
Also the stress/anxiety relation is not that clear - there are studies confirming that (you can check PubMed yourself, at least the abstracts), yet the mechanism is not known.