Living with BFS: My Story

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HatteryHippyHousewif

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Hi,First of all I want to say that this site has been like a life line to me recently, whenever my anxiety and fears kick in the reassurance I read on other posts is immeasurable.I have been twitching for about 6 months now, all over, from big thumpers to fine invisible ones. Eyelids, calf muscles, eardrums, everywhere. I have tried to convince myself (as has my gp) that it is bfs but I have the same dreaded fear everyone else on here has. My fear is only enhanced by the fact that my mother died of MND when I was 12 years old and she was only 36. I am now 30 and have 2 young girls and I am in constant fear of history repeating itself, as I read somewhere on here that it is usually only familial cases that strike so young. I remember asking my dad when I was about 14 or so if I could inherit this and he told me no......still doesn't stop the fear in the back of my mind.I have no weakness other than days when one limb feels heavy and sluggish and then next day it can be fine and another limb feels it instead. I have pain in my hands and feet at night, the rational part of me KNOWS these are not signs of *** but rather bfs. The major panic I am having right now are the number of very very fine twitches I feel, almost like a hair tickling over my chin, lips, cheeks and nose and also on my toes, soles of my feet.I tire easily and feel almost detached for want of a better word, like I am constantly in a daze. My gp has referred me to a Neuro, but has also stressed she has done this for my own piece of mind as she would have been perfectly happy to send me away with her diagnosis of bfs.I admit I have all the hallmarks; pins and needles, tingles, buzzing.....guess I just need a kick up the backside telling me to snap out of it!!Thanks (and sorry for the long post)
 
Given your history, were considering genetic testing? It is true that familial ALS appears a bit earlier than the sporadic one but again, it depends on the type (there are many, many types except for the very well known SOD1 mutation).First degree relative with ALS is indeed an acceptable reason to be tested if you are worried.Of course it is possible it is just a coincidence but surely this is something to check to give you rock solid peace of mind.
 
Thanks for your reply. I did mention it to my GP but as there was no wider history she thought there was no need........now sitting here in full blown panic. I genuinely feel I am going mad most days.The only thing that is keeping me somewhat sane is that my mother progressed so rapidly. She began dropping things and complaining of her hand not working at the end of July 1995 and was hospitalised August and passed away 6th September. I have been told that the younger you are the quicker the disease can take it's hold......not sure of the truth in that though.
 
Well, there are several types of familal MND - some are extremely fast and some have longer duration than the sporadic disease. What about your mother's parents or her siblings, no signs of ALS in the lineage?You could push for the testing, a MND specialist in this case - if you experience fasciculations and have a first degree relative with ALS - should offer you the testing automatically. Bear in mind that many GPs have no or very limited knowledge when it comes to ALS. I have known several who thought it is SMA or MS..
 
No other members of the family with MND, my maternal grandfather died before I was born, he had a tumor. My maternal grandmother died aged 72, my mother has 1 brother who is nearing 60 and is in good health. As I said I have no weakness, grip problems, foot drop etc. I am a long term anxiety sufferer also. Hoping the neuro can clear things up for me
 
Dear,I am deeply sorry for your situation.There are some other members on this forum with a parent died of ALS then having twitches. Like me.In my case, my mother was diagnosed with ALS (age of onset 58 yrs, no other relative with ALS) in March 2013, then I literally spent 6 weeks (days and nights) on google reading about ALS, then 6 weeks later, bumm twitching all over, having all bizarre symptoms and losing sanity. I was 26 yrs and had two little ones just like you, and really I was lost. I was hysterical.So it was 14 months ago. Still twitching, but did not develop clinical weakness, nothing similar that my mother had. Anyway, twitching was not a first symptom for my mother.I am open for PM discussions too. Best regards,Kriszti
 
Hello Mrs Red,I am terribly sorry to hear about your Mum. What you need to do, if possible, is to put your Mum's illness to one side and focus objectively on your own symptoms. For me, and I am not a doctor, they are textbook anxiety related symptoms. As you will already know, there is a slightly higher chance of you getting ALS due to your Mum's illness. However, the chances of you contracting this are still incredibly remote. You need to move on.Easier said than done. I have three kids and I am two years plus into this game. If you can, I recommend getting out and getting active. It's hard to think that you are suffering from ALS if you just spent the afternoon wrestling with the kids without noticing weakness.Twitches in isolation are really nothing to worry about. I get them literally all over and now I just laugh. Ran my fastest half marathon last weekend, feeling fit and strong, but I twitch. Some people have other issues like lisps or stutters and this is now how I see this condition. It comes and goes but is benign.All the best and god bless.SM
 

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