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Back from neuro

PostPosted: August 28th, 2014, 2:43 pm
by MrsRed
Hi everyone, I dont know if anyone remembers me, only posted once a few months ago. So by no means an active user.....but certainly an active lurker!!! My post was about the same concerns everyone on here has, my exception was that my mother died from MND when I was 12 and she only 36. The posters that replied, quite rightly told me to go to a neuro because familial MND can be a strange beastie!! My GP was convinced it was anxiety as mum was the only member to have MND so not familial. Of course all I could think was 'someone has to be first in line. Anyway I decided not to post anything else as I didn't want people with the same symptoms to go off the deep end if I did indeed have onset of MND. Cut through 12 weeks of waiting hell.....I finally saw my neuro tonight, a highly respected one.

I have a diagnosis

BENIGN CRAMP FASCICULATION SYNDROME!!!!!

My clinical was completely normal, strength fine, reflexes fine. After over 8 months of this he has no MND concerns whatsoever. He says absolutely no need for EMG but he will do one if I want that final bit of reassurance. I was half way through saying no because I don't want to be one of those people who don't believe their doctors but thought meh what the hell. The doctor fully expects it to be normal, as do I now I finally have my anxiety under control.

Sorry for the epic long post but I'm on cloud 9 right now. Off to hug my daughters extra tight. BCFS may suck, but it won't kill me!!! xxx

Re: Back from neuro

PostPosted: August 28th, 2014, 4:58 pm
by Pascal35
Hi MrsRed,

I am sure all will be fine...
After the clean EMG i would suggest you make some DNA tests to check about familial ALS and clear your mind with it once and for all...
Otherwise this fear would never let you in peace.
All the best!

Re: Back from neuro

PostPosted: August 28th, 2014, 6:27 pm
by donnastar
Very good to read about your appointment with the neurologist MrsRed. Not sure if should say congratulations since BCFS does suck but much better then what many of us fear! I do remember reading your post and thinking how terrible it must have been to lose your mother at such a young age. Considering most of our anxiety here on the forum I can imagine it was much more heighten from your experience. We have some symptoms in common from the body wide twitches that range from thumpers to invisible ones and buzzing. Plus I have 2 daughters. I saw a neuro last October and I wasn't experiencing cramps then. Since then I have in my feet and calves, with more recently really strong cramps in the feet. Guessing you get cramps as well with the BCFS diagnosis? If so I'm curious if your neuro spoke about cramps and suggestions to relieve them? Enjoy cloud 9 with your daughters and don't forget this feeling. I try and remember it if I'm having a bad twitching day. Hugs.

Re: Back from neuro

PostPosted: August 29th, 2014, 7:50 am
by MrsRed
Thank you for the replies. I don't think the neuro said anything in the way of relieving the cramps.......to be honest I don't think I took much in after he said BCFS, was too busy trying to restrain myself from crying and hugging him!! I will speak to husband when he went in because he took notes for me because I knew I wouldn't take much away from it whatever the outcome had been.

As for the DNA testing, thanks for the advice but I don't think that is a road I want to go down. After a lot of thinking over the past few months I have decided there is no point. What will be will be. If I tested positive I would spend the rest of my days in fear for myself and for my girls even though testing positive does not mean you will definitely get the disease, plus there is more than one familial gene but only one you can test for. I prefer to believe the neuros who have said non familial and my condition is BCFS and anxiety. Call it naivety, call it blissful ignorance but I have wasted nearly a year of my life gripped with fear and I don't want to waste any more. Much love xxx

Re: Back from neuro

PostPosted: August 29th, 2014, 8:51 am
by Pascal35
I agree with your point. I would have probably have done the same.
Wise thing to do!

Re: Back from neuro

PostPosted: September 4th, 2014, 8:50 am
by MrsRed
Quick update - Had Nerve conduction and EMG today. Both clean, very happy girl right now. I know there is something going on with me, as mentioned earlier neuro said BCFS and GP also thinks may be fibromyalgia. To be honest either of these are manageable liveable conditions, they may be uncomfortable annoying worrisome and painful at times but they are not fatal. A clean emg is the holy grail for us twitchers. xx

Re: Back from neuro

PostPosted: September 8th, 2014, 8:40 am
by Nytviolet
Hi Red, I'm delighted for you! I agree that additional testing is not warranted. Bask in the bliss of knowing you're okay (although I'm terribly sorry about your mother...36 is so young). As a Fibro person for many years, there are several great websites to gather info and participate in support groups -- fascics are common for fm patients. Congratulations on your clean tests!

Re: Back from neuro

PostPosted: September 23rd, 2014, 8:56 pm
by LKP1231
So glad for you! I lost my first husband to als over 8 years ago. He did not start with twitching. He had trouble with his thumb - weakness and atrophy. I'm going thru an extreme bout of sudden onset twitching widespread mostly in feet and legs for six weeks. My emg will be completed next week. Hoping for good results. Again, so glad for you.