Auroraroxx
New member
Hi everyone 
)
Firstly, I would really like to thank everyone who has taken the time to write on this board, the relief that I and my partner felt when we found this was indescribable. She was sure she had ALS (MND, in Australia) and to make matters worse, my best friend had just been diagnosed with ALS. Her (best friend) symptoms are definately NOT the same as what any of you are describing - she started tripping over last november - we actually had a giggle about it one day - and was diagnosed this Feb - the giggling stopped.
Anyhow, my partner started to have severe calf twitches around the same time - she has always had some trouble with cramps at night on and off - but this was different, it looked as though she had a load of worms under her skin, very bizzare..... she was very frightened and i eventually encouraged her to see a neurologist - very coincidentally, it was the same neurologist that my friend was sent to.... to cut a long story short, the neurologist quickly told us that shedid NOT have MND or ALS - these muscle fasciculations were quite normal, a bit annoying we could quite comfortably go home and not worry.
Well, we did that and now my partner is starting to get more twitching, around her back, forearms and constantly in the calves. I can see that although she is incredibly relieved that it is not ALS/MND it really gets her down but she is reluctant to 'whinge' about it given the assurances by the neurologist.
I would love to hear from anyone that has suggestions on what I can do to support her? Any things have have worked for you? Thank you so much for reading this and for any suggestions you may have. Thanks Monika
)Firstly, I would really like to thank everyone who has taken the time to write on this board, the relief that I and my partner felt when we found this was indescribable. She was sure she had ALS (MND, in Australia) and to make matters worse, my best friend had just been diagnosed with ALS. Her (best friend) symptoms are definately NOT the same as what any of you are describing - she started tripping over last november - we actually had a giggle about it one day - and was diagnosed this Feb - the giggling stopped.
Anyhow, my partner started to have severe calf twitches around the same time - she has always had some trouble with cramps at night on and off - but this was different, it looked as though she had a load of worms under her skin, very bizzare..... she was very frightened and i eventually encouraged her to see a neurologist - very coincidentally, it was the same neurologist that my friend was sent to.... to cut a long story short, the neurologist quickly told us that shedid NOT have MND or ALS - these muscle fasciculations were quite normal, a bit annoying we could quite comfortably go home and not worry.
Well, we did that and now my partner is starting to get more twitching, around her back, forearms and constantly in the calves. I can see that although she is incredibly relieved that it is not ALS/MND it really gets her down but she is reluctant to 'whinge' about it given the assurances by the neurologist.
I would love to hear from anyone that has suggestions on what I can do to support her? Any things have have worked for you? Thank you so much for reading this and for any suggestions you may have. Thanks Monika
and listens when I'm having bad/anxious days about all these crazy things that are going on with my body (Even though she may throw in a hypochondriac comment or two)..hehe. It's very hard for people to experience certain symptoms which can overlap with symptoms of very serious/terminal diseases. It's only been a few months that I have been experiencing the twitching/shaking/bussing, etc - so I am by no means a BFS veteran but I am in the process of begining (hoping) to believe that this is really what is wrong with me - hoping that BFS is the actual diagnosis and not one of the scary illnesses.