totaltwirls
Well-known member
At the onset of my symptoms I had terrible pain and burning in the back of my neck. It kept me up and got worse when I would lay down to try and sleep. It seems to have stopped for now.
Pain and Burning in Neck - Gone Now?
- Thread starter totaltwirls
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CursedLeprechaun
Active member
At what point would you become worried about a new symptom. With BFS seemingly being an all-encompassing malady, when do you go back to the doctor (GP or neuro)? Only when true, cup dropping, foot dragging weakness presents? My GP seems to be fairly uneducated on BFS and the neuro seems to feel like he has made his diagnosis and that's that.
If I were to call the neuro about this pain/burning in my neck or the pain in my calves and the stiffness in my shoulders and fingers and toes that I have been feeling for the last week, the message he would relate through his nurse would be "the doctor diagnosed you with benign fasciculations and those symptoms go along with that." Reassuring to a degree, but not completely.
If I were to call the neuro about this pain/burning in my neck or the pain in my calves and the stiffness in my shoulders and fingers and toes that I have been feeling for the last week, the message he would relate through his nurse would be "the doctor diagnosed you with benign fasciculations and those symptoms go along with that." Reassuring to a degree, but not completely.
totaltwirls
Well-known member
I was exactly the same as you. As a matter of fact, at my last neuro visit, she had told me that she went to a recent conference, and for the first time, there was a roundtable discussion about BFS. Apparently, there are more cases showing up. She sees about 1-2 cases per month and she is in an office of probably 20 neuros, including their pediatric division. Her and I spent most of our time discussing the roundtable and alot of it, they believe is triggered around the stressful lives alot of us live today, thus building on those that are already susceptible to anxiety. I do know what you mean about the new symptoms though, for example, today, my right leg is vibrating from thigh to calf on the top, not the back of the leg. I have twitched in that leg many times, but never experienced the vibrating over the entire leg. I have had it on the bottoms of my feet. This makes me a bit anxious and I am waiting for it to stop, as all the other weird things do, or they come and go. Had this happened 4 months ago, I would have been to the ER in schitzville 
. We can just take each day as it comes, but I definitely recommend seeing your neuro for reassurance and having that discussion. Perhaps if it is answers to questions, that may be a phone call vs. a visit, but get the reassurance you need. Sometimes I felt like I was asking her the most stupid questions. She would laugh sometimes, but completely understood my anxiety. At one point, she threatened to drive to my home and destroy my computer.....
. We can just take each day as it comes, but I definitely recommend seeing your neuro for reassurance and having that discussion. Perhaps if it is answers to questions, that may be a phone call vs. a visit, but get the reassurance you need. Sometimes I felt like I was asking her the most stupid questions. She would laugh sometimes, but completely understood my anxiety. At one point, she threatened to drive to my home and destroy my computer.....CursedLeprechaun
Active member
The neuro laughed at my appointment, too.
After discussing my symptoms, checking my reflexes, putting me through the feats of strength portion of the exam, and informing me that the fasciculations were benign, he asked me what disease I thought I had. When I told him ***, he laughed (maybe chuckled) and stated that it never ceased to amaze him how many people self-diagnose themselves with ***.
I told him that Al Gore was to blame for me being an anxious mess. The neuro asked me how it was Al Gore's fault and I informed the doctor that if it weren't for the internet (Al's invention if I remember correctly) I wouldn't have had the resources with which to self-diagnose myself.
After discussing my symptoms, checking my reflexes, putting me through the feats of strength portion of the exam, and informing me that the fasciculations were benign, he asked me what disease I thought I had. When I told him ***, he laughed (maybe chuckled) and stated that it never ceased to amaze him how many people self-diagnose themselves with ***.
I told him that Al Gore was to blame for me being an anxious mess. The neuro asked me how it was Al Gore's fault and I informed the doctor that if it weren't for the internet (Al's invention if I remember correctly) I wouldn't have had the resources with which to self-diagnose myself.
Valentine2
Active member
Back to the original post of neck issues. Just my two cents that after 4 months of this- it's my newest symptom. It's specifically the neck area betwee the two collarbones and it just feels achy and scarily I'd go so far as to say it "feels" weak. Whether or not it really is...(?)
And so goes the nightmare of deciding whether to run to the ER for a neuro apt with every new symptom or just hoping and praying that you won't be dead in a year. So far I'm doing the latter. It's a tough life.
And so goes the nightmare of deciding whether to run to the ER for a neuro apt with every new symptom or just hoping and praying that you won't be dead in a year. So far I'm doing the latter. It's a tough life.