Diagnosed BFS: Twitching Update

[RottenyFatFatBastard]

Hello,after having had generalized fasciculations for almost 12 months (mainly in the calves and hands, but somethimes allover) and several neuro visits (including a clean EMG and transcranial MEP in January this year): diagnosed BFS.I had another neuro visit yesterday in a university hospital in Germany. The reason was that I feel more pronounced twitches, including both arms, my shoulder and back since about 2 months and also buzzing muscle sensations in my calves and elsewhere. I have no objective weakness, but I tend to feel weak in parts of my body, especially during my hard daysTranscranial MEP (test for upper motoneuron) was ok and unchanged to January, but the EMG revealed "reinnervations signs" with some polyphasic potentials in my hand, shoulder and leg. The examiner thaough it was pathologic, but nor indicative for MND, rather myopathy. I was shocked and had problems to keep my contenance.The senoir staff neurologist who discussed the results with he (he is the same I have met last October and January) said this was not indicative at all for any pathology, not MND, not myopathy. He reassured my to relax and get the whole story of MND out of my head. He said my risk for developing MND was not higher than his.After having spent a terrible night I went to see him again this morning to aks mor about the EMG and the polyphasic / reinnervation signs. He said such signs were also present in normal muscle and one could not base any suspicion for a disease on it.My question to you fellow twitchers: did anyone have reinnervations signs in the EMG and is this still compatible with BFS ?I am not feeling well at all and have bad, bad fears...RegardsOliver

 

[ionyZarrion]

Hi Oliver,I do not really know enough about your medical results to comment but your doctor does so you really have to trust him.There are others here who have had not so clean E.M.G results...ah I think Alienhost and Simon and probably loads of others... so you are not alone in that...In my short experience with this problem I have found that fighting the fear is the only way back to a good and happy life so my only advice is to try and deal with this side of things as best you can...Everyone here has experienced or is experiencing the same terror and all of us are fine...take comfort that your not alone.Good Luck,Darragh

 

[Trees]

I am 28 and had a slightly abnormal EMG with signs of fibrillations on my left shin and PSW on my lower back, what ever that means, but I am still as strong as ever and have been twitching since March of this year. My neuro ruled out MND and yours did too, so you just need to trust your neuro.

 

[AllGoodHere]

I was informed by a leading neurologist that muscles normally 'suffer' some denervation and reinervation from the time of childhood. He said it is just another refurbishing process of the body. So then I guess its 'compatible' with bfs - and yes people get it here - I was told I had some. It is a matter of quantity- if it is massive then that may indicate a problem but since you are getting around fine - don't see how it could be on any scale to worry about. It is a fact that diagnosing neurological problems is a skill that comprises looking at sets of evidence and drawing conclusions and it is rarely just one test that they use for any final judgment. Listen to your neuro - he has been at this much longer than you have and should even have a medical degree to show he knows what he is talking about. Besides 12 months!!! if anything was truly wrong there would have progression obvious to him from just your office visit. Remember, we aren't neurologists here - just twitchers, crampers, and tinglers, buzzers, etc. so asking about results - you will just get that person's experience which may be reassuring but not definitive.

 

[BarbiePetals]

Listen to AllGoodHere... I have also heard of others on this board showing that on their EMG's. Your doctor sounds like he knows what he is talking about. Believe him. You are fine.

 

[RainCat]

re innervation, denervation, chronic neurogenic changes in myotomes, motor neuropathy radiculopathies have all been mentioned in my emgs. After 5 years. the good thing is no weakness, im still as strong as an old yorkshire brick sh*thouse.

 

[onesMJonesy]

Yes I had much the same sort of results plus the buzzing that you mention. I also experienced much anxiety as a result. I have fully recovered and no longer twitch so be rest assured that your results are normal and not indicative of mndMaria

 

[onesMJonesy]

I think the hardest challenge with BFS is overcoming the fears and worries associated with it. If you've been given the all clear by your neuro you have to somehow get over the fear that there may be something wrong. Your continued worries and fear fuel your twitches. They key to recovery is acceptance. When I say recovery I don't necessarily mean the twitching, I mean the mental anguish that is associated with the twitches. When you accept and truely believe that you don't have anything nasty going on with your body just go with the twitches and try not to think about them. Be indifferent towards them. I know they are uncomfortable but if you don't pay any attention to them you may just find that they will fizzle out like they did with me. I also undertand that perhaps this advice may be difficult to put into practice but work at it and you will see results. If they continue to hang around don't pay attention to them. Remember they are benign and they are just sensations and that's all. Maria

 

[bfhopeful2]

it's scary shyt no doubt. Had signs of chronic changes in my emg in january. They say from back injury. I know the feeling. With everything you read it seems to all add up in your head that ife as you know it is over. Thank god for us our minds are just playing tricks on us. I just had a nuero appt like 3 weeks ago and again he cleared me. You'll be just fine. It takes some time to pass before you believe it but it does get btr.