Welcome! Twitching and Neuros

[GinniferLynne]

Hi and Welcome.

When you mentioned twitching to your neuro, and it didn't "register", that is because most neuros are not concerned with twitching alone. My neuro has told me that, CCF neuros have repeatedly stated the same. They get concerned by the fascics only by the "company they keep".

My twitches have waxed and waned throughout my three years of this stuff. There were days I hardly twitched at all, and other days I felt for sure my body was going to explode.

Congrats on your clean exam and EMG!!!

Ginny

 

[furballfury]

Actually, I believe Jannell said there was no BFS diagnosis per se, and that may be confusing guidance to "accept the diagnosis". When I was a newbie, I thought there was signficance to the fact that my neuro refused to "diagnose" me with BFS.

There isn't any signficance to that Jannell. What is significant here is that your EMG was performed after the onset of your symptoms - notably perceived weakness and twitching. Were you to be experiencing these due to a motor neuron problem, like **S, you absolutely would have shown problems on your EMG. That is because of the nature of the disease - **S causes the death of motor nerves supplying the muscles which in turns ultimately causes muscle decay. This process is absolute to the disease course, and is irreversable. Since the EMG picks up on this process, it would by definition have indicated something were that process already be underway in you. It is therefore irrelevant whether twitches have "gotten worse" in severity since the test, and there is no grey area there. It takes a while when in this "concerned" state to grasp on to that, but that is why your doctors were able to conclude with ocnfidence that you do not have motor neuron disease. You must now work on accepting and understanding this too. It may sound overly simple, and your mind will want to play tricks on you, but this is reliable, and you can now focus on the living, and the moving on.

My symptoms wax and wane, and like Basso, they have been kicking up of late, but with a firm realignment of my focus, and a true acceptance of what is, and what is NOT going on when the body acts up, it hardly matters anymore. You too will get past this.

Best wishes for continued health and happiness -

JG

 

[furballfury]

Actually, I believe Jannell said there was no BFS diagnosis per se, and that may be confusing guidance to "accept the diagnosis". When I was a newbie, I thought there was signficance to the fact that my neuro refused to "diagnose" me with BFS.

There isn't any signficance to that Jannell. What is significant here is that your EMG was performed after the onset of your symptoms - notably perceived weakness and twitching. Were you to be experiencing these due to a motor neuron problem, like **S, you absolutely would have shown problems on your EMG. That is because of the nature of the disease - **S causes the death of motor nerves supplying the muscles which in turns ultimately causes muscle decay. This process is absolute to the disease course, and is irreversable. Since the EMG picks up on this process, it would by definition have indicated something were that process already be underway in you. It is therefore irrelevant whether twitches have "gotten worse" in severity since the test, and there is no grey area there. It takes a while when in this "concerned" state to grasp on to that, but that is why your doctors were able to conclude with ocnfidence that you do not have motor neuron disease. You must now work on accepting and understanding this too. It may sound overly simple, and your mind will want to play tricks on you, but this is reliable, and you can now focus on the living, and the moving on.

My symptoms wax and wane, and like Basso, they have been kicking up of late, but with a firm realignment of my focus, and a true acceptance of what is, and what is NOT going on when the body acts up, it hardly matters anymore. You too will get past this.

Best wishes for continued health and happiness -

JG

 

[popAlisonpop]

one more thing . . . .

I just read the intro page and I was surprised to see "pins and needles" listed as a symptom. I have this too but was chalking it up to something different.

Do any of you have these sensations too?




Janell