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Typical post after emg re doubts!

PostPosted: October 3rd, 2014, 6:47 am
by LKP1231
I swore I would not doubt the emg. If it was totally clean I guess I might have unless I doubted the drs ability. There were 2 spots w facics and his diagnosis was still no *** which I had him repeat several times! He didn't even request a retest on my follow up in 8 weeks. So I'm glad for that but I'm not sold on the reason for twitches. Multiple discs in back and neck out of whack. I think it could account possibly for some of it but I'd believe it more if he had said it was bfs or something along those lines. Benign twitching was never even brought up. If not caused by disease isn't it logical then?
Anyway I'm not searching out another dr to go thru this again. I got the words I prayed to hear which was no ***. I'm not looking to have it. I just need to realize that my symptoms remain and I must trust the testing. I know so many have been where I am. I didn't think I'd be there too.

Re: Typical post after emg re doubts!

PostPosted: October 3rd, 2014, 8:24 am
by guitarguy11
I don't think that anyone knows why, but anxiety and stress can cause your brain to mimic almost any disease. Anxiety and stress can cause twitches and sensations that convince us we have ***. Then the vicious cycle begins of self-testing, self-doubt, panic, doubting doctors, etc. The best "cures" for most of us are learning to relax, get better/more sleep, stop tensing muscles, controlling anxiety either with professional help or self-help and the passage of time and reducing stress as much as possible. I know some of this is easier said than done.

Re: Typical post after emg re doubts!

PostPosted: October 3rd, 2014, 8:34 am
by LKP1231
Thanks guitarguy. I know you're right. I am planning to move on and deal with my anxiety, I started with a therapist and I'm sure she will say just what you have. Getting away for the weekend and hopefully that's a good start.

Re: Typical post after emg re doubts!

PostPosted: October 3rd, 2014, 9:18 am
by trustme78
LKP1231 wrote:There were 2 spots w facics and his diagnosis was still no *** which I had him repeat several times! He didn't even request a retest on my follow up in 8 weeks. So I'm glad for that but I'm not sold on the reason for twitches.


Two things I would like to add: My impression is that fascis showing up on the EMG are not a bad sign or something to be worried about. I read several times here that people had fascis showing on the EMG.

Second thing is that neuros may have theories why we twitch but no real answers. My neurologist told me she tried everything to get rid of her eye twitch and nothing helped so she can tell me what doesn't work. I decided to stay with one doctor. I think I might lose respect for them if I visit five of them and get five different answers. I might start to doubt the initial claim that it is harmless :-)

Re: Typical post after emg re doubts!

PostPosted: October 3rd, 2014, 9:25 am
by LKP1231
In regard to going to different doctors - I'm trying to think that if one dr does not see symptoms of ***, another doctor should not see them either. Or rather if the symptoms are there, a trained doctor in this field should see them after performing the required testing. As far as further diagnosis of twitching, that may be more speculative in the absence of actual disease. This is what I keep telling myself.

Re: Typical post after emg re doubts!

PostPosted: October 3rd, 2014, 3:16 pm
by DoubleD
I have had BFS for almost 8 years. I can confidently say that I have had every fear/doubt/test/ questions that everyone else around here has. The word syndrome means . "A group of symptoms that collectively indicate or characterize a disease, psychological disorder, or other abnormal condition." . Two things that makes that a problem for us is most Neuros refuse to call what we have a disease because they can not nail down the cause of the problem or even worse they have no 100% effective treatment. The second is the psychological distress it puts on us. BFS breaks us down physically. Once the fear of ALS takes hold of us it is extremely hard to defeat. We Google our symptoms over and over until we find that story or site that convinces us we have als. I understand we are all just trying to figure out what the heck is going on. But the bottom line is at this point nobody knows. They don't have answers for als nor for BFS. I talked with an ALS specialist and he said that eats away at them. Nobody wants to cure ALS more then neuros . And they want to cure any nervous system disorder.

Having said all that they do know when we DONT have ALS. They don't miss. Ever. They don't rule ALS in they rule it out. The doctor also told me all neuros know when ALS walks in the door. They just don't drop that on someone until they follow protocol. They will tell you when you don't have it. If ANY neuro say no ALS it's solid. NO ALS.

But because we are broken physiologically and don't have much defense left, we cannot possibly process that all these symptoms we have is either a syndrome or stress or just in our mind.

The real battle is after the emg. Getting on with your life and not going from doctor to doctor hoping for answers or a cure. There is no cure for BFS.

I hope you find peace before you find answers. Maybe you have a back issure or pinched nerve...... But that will not cause body wide twitching. You have BFS.

All my best

DD

Re: Typical post after emg re doubts!

PostPosted: October 4th, 2014, 7:21 am
by LKP1231
I agree. There is no way my back is responsible for all of this. They do not subscribe to the bfs theory there. So I must be comforted that I don't have this disease but my symptoms will still exist. It's very hard. They did reiterarate no signs of ***. That part I need to remember.

Re: Typical post after emg re doubts!

PostPosted: October 4th, 2014, 10:37 am
by trustme78
DoubleD wrote:I
Having said all that they do know when we DONT have ALS. They don't miss. Ever. They don't rule ALS in they rule it out. The doctor also told me all neuros know when ALS walks in the door. They just don't drop that on someone until they follow protocol. They will tell you when you don't have it. If ANY neuro say no ALS it's solid. NO ALS.


Amen to that!
This is so right. That's exactly the impression I got from the conversations with my neuro.

Re: Typical post after emg re doubts!

PostPosted: October 4th, 2014, 12:16 pm
by DoubleD
You do not ALS. You don't have a MND of any kind. What you have is BFS . I have always believed BFS is a disease. Once I owned it as a disease then it got tons better for me. It won't shorten your life span but it will affect it. Please please don't be like me. I spent thousands of dollars and years trying to track down what I had. In the end every neuro said the same thing, in different words, BFS.

Don't let the fact that your neuro does not subscribe to BFS. Most places do not recognize ANY syndrome. To them it's a trash can for things they have no answer for. I have been to 5 neuro clinics and 2 out of 5 did believe in BFS, but the other 3 said they don't. One neuro said they just won't except when they have no answers sometimes. Smart people have a hard time with that.

Your life is waiting for you. Go enjoy it

DD