My Last LS Neuro Specialist Visit

Highlights Only
T

Trees

Member
I just thought it will be interesting to post my last visit with the *LS neuro specialist. As I have posted on my previous post I had a minimally abnormal EMG, had some fasciculations and a finding of a L5 lower back pinched nerve which is causing minor fibrillations on my left shin. This was a case where having another EMG added more to my anxiety rather than helping me. I have been following up with the doctors and are due to start some steroid shots on the back in order to alleviate the swollen nerve. I am not sure this is going to cure my lower body fasciculations as well as my contraction fasciculations on my thighs, but it sure will help ease some of my back pain.So of course I went down the Bulbar road since I did what we should all stop doing and googled about fibrillations and read that lower motor neurons can be affected 1st by *LS when its a Bulbar onset. Then I saw my tongue twitch and had some weird saliva and burning sensation on the corner of my lips. So I had an face EMG done again and it was normal. My neuro didnt even wanted to do it since she saw no reason as to why do it. I kind of had to tell her it would ease my anxiety if she did it. I asked her why she wasnt worried about the fibrillations and she told me that the needle is so sensitive that it can pick very fine fibrillations. If it was the bad kind of fibs they would have been more wide spread on my left leg. Also the fact that she found that L5 had PSW, it meant it was a back issue, which she told me was supported by the ct-scan finding of a grade 1 L5-S1 disk slippage. She told me she wasnt the worried at all about *LS, that I shouldn't either. Just to ease my anxiety she checked my strength on my legs and did reflex check, then she told me that it was normal as well. I asked her about the tongue twitches and she said that even if she saw fasciculations, which she didnt see, it doesnt mean anything without any of the other symptoms, slurring, drooling like a dog and all the symptoms we all seem know so well, lol.I then asked her about all the weird symptoms that we all seem to get, the burning, the electrical sensations, fatigue, tremors, and any other weird stuff that involves the nervous system and she said that it can all be related to BFS or BCFS. Everyone has different symptoms and new symptoms might develop but its all benign. She told me I just have to learn to cope with the symptoms. She said there are medicines that can cover up the symptoms in some people but not cure it, like Clomazepam, or Gabapentin(Neurotin) . She told me the safest to use is Neurotin, but I told her that Clomazepam helps me out in relaxing and minimizes my twitching some what. I asked her if theres anything I should worry about or look out for and she said that if it was any bad decease I would definitely know,meaning I wouldnt get better some days and worse some others, like I do now, and like many of us on this forum do, it just doesnt happen like that in *LS. She told me I was lucky that I didnt have a lot of pain , that some of her patients that have BCFS are in constant pain all the time. She also mentioned something interesting, that to her experience, men are more prone to developing BFS/BCFS. She doesnt know why but she gets a lot of patients that complain about twitching and for the majority of the time the diagnosis is BFS/BCFS.She also told me to stay of Dr.Google and respect her diagnosis. She doesnt want to see me until 3 months from now just to follow up on how I am coping with the symptoms. The funny thing is that I went to see her when I had the worst tremors(my neck, foot, hands, fingers) and fasciculations, (between by index finger and my thumb on both hands, on the face, my shoulders and biceps were going crazy). I showed her and told her how I felt and she said that "none of it concerned her, as long as theres no weakness theres nothing to worry about, and even if there is some weakness, it might be do to something else, so relax"....
 
Very good reassuring post, Big O. Its great advice that I will take, coming from the A word specialist you visited. Wish my neuro would have been as succinct . . .
 
Just wondering how many people were actually told by their neuro that they had BFS, and then that their neuro actually took the time to explain what BFS is, rather than "your twitches are benign, have a nice day . . . "I am imagining very few, since this web site exists . . .
 
JoggingCub,I have the same thoughts. I am always interested in what neuros say when asked what they think causes bfs and how frequently they see it.Krackersones
 
Jennifer--On Wed--stopping by my neuros office (just to pick something up)- ran into the neuro who gave me the EMG-I DID ask im.."What is the cause of BFS?"....he answer..."We really don't know!"-that seems to be the overall.."answer"...one gets!I'll see what the neuro at Mayo Clinic...tells me!
 
Thanks for asking Christian. I won't hold my breath for a different answer from Mayo but it sure would be nice if they had one and maybe some new science to back it up.
 
In NZ doctors tend not to put the word 'syndrome' at the end - I and a few other medical collegues who I have spoken with have been told that we have 'benign fasciculation'. Those with cramps too are told they have 'benign cramp fasciculation SYNDROME' i.e. the word syndrome is added in this situation only. Most of us have been told by our neurologist colleagues that it is thought ot be post viral. I personally tend to believe that, for a good number of us twitchers, BFS is an abnormal immune response to a viral infection and I have this theory about enteroviruses as the culprit virus in some cases.CheersSimon
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top