Newbie Worried About BFS Symptoms

[ortherapist]

Hi AllI've finally plucked up the courage to post after spending the last few weeks terrified that my life is about to change drastically because of a disease I knew nothing about until recently.My main concerns stem from the fact that my symptoms don't seem to quite fit with many of the typical BFS ones I read about on here (I know you're probably all thinking, here we go, another newbie who thinks she's something different ) but I'm really hoping you will hear me out and that those of you who have lived with this for some time, may be able to offer me some reassurance.Just over a month ago I started with a twitch in my right thigh that literally has not stopped since and seems to be getting stronger and more frequent. It is a very visible fasiculation (I can't always feel them but can see them) and is often strong enough to be seen through my clothes.What really concerns me is that, unlike many people on here, I haven't had much twitching elsewhere. The only other twitching so far has been an hour or two just above my left knee on one occasion (visible again), an upper eye twitch that lasted for a morning and a fifteen minute session of, what felt like machine gun fire in my shoulder blade and thats it. The widespread, more random twitches that lots of people talk about, I don't seem to have.I'm really concerned that ALS seems to start in one area and then progress from there and that my constant, localised fasiculations are the start of something dreadful.I have also noticed this last week that I seem to have a dent slightly above the area where the fasiculations are (I don't think it was there before but then I am looking for every dent or shallow now)I have seen my doctor who has carried out the usual round of blood tests for deficiencies, thyroid, ESR etc which were all fine. She then sent me away with some medication for nerve irritation which hasn't had any effect whatsoever.I am due to go back this Friday for some strength tests but have decided I simply cant wait any longer. Living in the UK our NHS system often means incredibly lengthy waits to see a specialist and so have told my GP to refer me privately and I will pay to see a Neuro (waiting to see if he will do this) In the meantime I feel I am going out of my mind with worry. I'm a 38year old Mum of 2 young girls and the thought that I may have this horrendous illness which they may have to watch me suffer is just too much to bear.Any support or guidance would be truly appreciated (BTW I think this site is fantastic and can not believe the time and effort people give in their attempts to reassure others.

 

[Gracer]

Hi,I would like to note that 1) ALS seldom initiates with twitches. 2) moreover, the nature of ALS is so that is starts distally and them goes up - e.g. people usually lost their fine motorics in the fingers or lost their feet mobility, and only then the disease comes to upper arm and shoulder or to tighs in case of leg. Should you have any bad MND, you would most probably lost your leg quite before the twitches begin, especially in tighs...yes there are stories when people are first twitching and then developing MND but usually it is still not ALS mut other types of MND. What you have now seems to be a hotspot, because you still have twitches in other areas of your body.My advice would be to take a deep breath and go and have neuro exam. What do you think could be a possible trigger event? Any stress? medication? viral infection? tick bite? Have you got any contact with chemicals (like making home reapirs/gasrdening?) How do you sleep - is it unitnerrupted sleep, do you have early gets up (at 3-4 am). etc/ etc. Are you generally prone to high anxiety or specifically to health realted one? Thinking about possible triggers would be useful also for doctor's visit because they anyway ask about this.I for example also had initially only eyelid twitch but so bloody persistent and strong that it made me nervous about... and I read about it and find that this happend when people have tumours!!!! WOW! in few days I got some twitches in thenar. Then evrywhere else, name it - also from few minues to hours...Hope your visit to neuro would clear up all questions.welcome on board,hugsYulia

 

[stephane999]

Don't worry, you'll have twitches everywhere else in a few weeks/months. What you have is a hotspot and is definitly not ALS.Welcome to the club...

 

[Gloria123]

All this started with a hot spot for me as well, in my thigh. If I twitched elsewhere I didn't know it, because my thigh was so strong, you could also see it through my clothing. It drove me crazy. Then I took Xanax after about 5 days of twitching (a hefty 1 mg dose), because I was so freaked out over it, fell asleep and woke up and it was gone. Then about a few months later, I noticed the twitching in my calves, and my overall widespread twitching.I agree with Stephane. You have what we BFSers term a hot spot. Pretty much all of us have had them. Some people, for months, so yours could possibly last that long.With my first hot spot, I think it's because I was cramped up on a small plane on a business trip. It started right afterwards. But, it could be caused by a multitude of things, like your electrolytes being off, a metabolic condition, sensitivity to medication, etc.Try not to worry about it. If you need formal reassurance, see a neuro or your general practitioner. But, if you don't - give it some time and it may actually go away on its own.Mitra

 

[jeffthefuture]

Any word from your GP? I'm going through a very similiar thing as you...quite new to this whole BFS 'adventure' and seem to have a real hot spot in right thigh as well (not so much which twitching, which is all over, but more so with a dull, achy muscle pain that just won't go away). I too also have a 'dent' on the right thigh but I think the universal concensus here is that muscle's do not atrophy in distinct chunks. I think (hope) my small dent is from long-term crossing of the legs (breaking down some of the subcuntaneous fat), progressive weight loss/toning from exercise, and/or an old injury from rugby that I never really clued in on. Also, if you are worried about the dent, check out body-builder pictures...those guys have tones of dents! lol

 

[flyboy101]

This sounds just like it started for me. One or 2 in a particular spot....a little "research"...a whole lot of worry and then bang...all over. I wouldn't worry because you don't feel this is happening "all over." Even those of us that claim this, still worry because for me, having them all over in both calves and thighs doesn't equate to "all over" in my mind at times. Then I would think, "well, if I would just have some upper body ones..well, then I'll feel one in my face, arms, even abs and then start freaking out. I truley hope that you get the widespread twitching that a lot of us have. It's not fun to worry about. To me and my unprofessional opinion, you have nothing serious to worry about. If you end up at a nuero, I hope that brings closure to this for you. For many, including myself, that helped, but didn't cure my fears. Our minds are a very, very powerful thing of wonder. Try to live your life, enjoy your family and move on to the best of your ability. This is a great place for support if the worrying is getting the better of you.Mike

 

[flyboy101]

Crap, I just re-read what I wrote, and I meant "I truely hope that you DONT get the widespread twitching that a lot of us have." Mistype.Mike

 

[DanceDuck]

Mike, your story and symptoms are almost identicle to me. I went to my primary a couple times for the twitching and they said not to worry about it but referred me to the nuero to basically ease my worries and it was about a couple months into it and she did some test and said i was ok but she said at this point you dont have ALS but twitching can be a symptom ect. and said to come back in 4 months at the 6 month mark so of course I was freaked out and at the 6 month mark she did my first and only EMG. The results came back good and nothing bad other than BFS but it was weird even after the EMG she said I cant guarentee that you will never get ALS but you have BFS now and BFS doesnt make you more likely to get ALS. I know what you mean by the nuero not exactly making you feel a whole lot better but based on your story and EMG I think you can quit worrying about BFS. Its best to jut accept it although hard at times and think of ways to treat your body better and do things that get your mind off the twitching. I know how annoying the twitches can be though believe me because I have twitches literally everywhere and I twitch alot.