Help with BFS: Need Advice

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Hi FolksFirst time poster but I've been reading posts here for quite some time. Most of the time I feel I get my answers from the many posts I've read which basically say - 'yeah that's BFS', but I'm going down a path to ruin at the moment and need some help. I'm a 53yo male.I started twitching with painful cramping in my left calf in Dec 2012, this progressed to neuropathy type burning pain over both ankles and the front of both lower legs over the next month or two. My GP suggested I be checked out for MS which came back negative (spinal MRI no contrast & followup head MRI with contrast), my neurologist exam result was negative for MS.In May 2013 I noticed what seemed to be weight loss around both knees and significantly on the outside of both legs just above the knee, when I'm sitting I can put all four fingers in the large dent that's on the sides of both my legs. My legs around and just above the knees on the outside have become very bony. I have also lost bulk in both my hands, especially in the finger\thumb pads and around both thumbs close to the thumb/hand joint, also looks like the thenar muscles have gotten smaller especially on my right hand. I have pain in the left thumb when trying to do daily tasks with my thumbs, have also had some wrist pain so I'm thinking there might be some carpal issue going on.So in Aug 2013 I went for an EMG and NC testing, the EMG specialist said he didn't see anything MND related but did mention peripheral nerve hyperexcitability, he also asked me if I had carpal tunnel in my right hand as the NC test was suggesting this.I went back to my GP in Sep 2013 and was told that the neurologist didn't believe there was any carpal tunnel or MND and asked me to come back in six months. My GP also told me I need to calm down and get my stress & anxiety under control, I couldn't agree more!So what's scaring me right now is what's happening to my hands which looks like muscle loss as they're becoming quite bony and the weakness in the left thumb, the wrist pain has mostly gone. I'm also quite worried about the weight loss or whatever it is on my legs, my GP doesn't believe that it's muscle loss but did write on my neurologist referral "muscle wasting", can you imagine how that freaked me out. The twitching is driving me crazy, especially the sensation inside the palm of mainly my left had which I guess is twitching which sometimes I see and sometimes I don't. I also have twitching pretty much all over, the all over twitching has been going on since early May. I was sooooooo happy with the EMG result but that now seems a distant memory and I keep thinking I need another EMG. I tried yoga but had to stop due to cramping in my feet. My knees hurt when I climb stairs. But I keep trying to remind myself that the EMG didn't suggest MND.I guess due to the stress I lost almost 10kg and I was hoping that this was the cause of the loss of leg mass on the side of both legs. But I put most of the weight back on but my legs didn't change. Yesterday I did 35 squats and a 6 kilometer walk without difficulty so I guess that's a good sign that legs and things are still working ok.So what do you think? My 53yo hands look like they're 80 due to possible loss of muscle or loss of bulk, large 'dents' on the sides of both legs just above the knees (which the neuro, EMG guy & GP have all seen), the twitching is stressing me like there's no tomorrow, and no-one can explain why I look the way I do or why I'm twitching. The all over twitching and especially the sensation I feel inside the palm of my left hand like a twitch which I can't see is driving me crazy, pretty much sums up my username sometimes :(My twitching is everyday all the time.Cheers & thanks for reading my "another BFS post", I pray that this is BFS !!
 
Hi,I can say only that if EMG/NC and exams did not suggest any neurodegenrative process, and becasue you seem to be quite fit and able to work with the hands, then it is not MND. MND means weakness and 10 months is well enough for weakness to get in.as for legs and hands... it is a good thing to understand that atrophy, especially essential one, does not allowwo people usually to enjoy their hands or legs. remember people in the cast - they have clinical weakness and subtle atrophy due to not using the limbs - and they have to learn back how to use cups or walk. If you run and do squats, it is whatever else but not atrophy, not for degeneration at least.At 53 you may already start to have some hormonal changes, yes, gents also have that - leading to loss of subcutaneous fat. becasue our hands do not have too much muscles, they are first to get bony when we are losing fat tissue. legs and arms are next. have you checked your hormonal status? it anyway might be useful. BFS often demonstarace carpal-like damages, knee pain, foot cramps. All this is within our classic picture.have you ever checled you bllod circulation in the legs? this might also result in muscle wasting without significant weakness, and cramps might be caused by circulatory issues too.hope this would help a bitYulia
 
Hi YuliaJust want to thank you for replying to my first post. I've read so many of your posts and can see that you've tried to help so many people here.I did have the circulation in my legs checked about 6 months ago with a doppler ultrasound and that was fine. Every test I've had, including blood tests, have been fine for this disease I'm most terrified of right now. The twitching is driving me crazy with worry, especially the twitching in the places where I seem to have lost weight or bulk. But I'm sure you're right, since it has been 10 months since I first noticed my leg twitching and I'm still walking around then I guess that has to be a good sign that this isn't any sort of MND even though the twitching has got really bad and has spread.I'm careful with my diet and I'm using magnesium for the cramping but it doesn't seem to help, maybe things would be worse without a careful diet I just don't know. I just wish the twitching would leave me alone for long enough to stop worrying to see if the worry and stress might be making things worse. My stress was much worse about 4 months ago, I couldn't sleep more than 2-3 hours every day and I became exhausted and that's when I lost the weight. Perhaps losing the weight caused my muscles to shrink a bit before I lost body fat and now the only way to regain the muscle is to workout a bit, exercise was never a favorite activity of mine.My family says just ignore the twitching but I can't, its there and scares me everyday, its the feeling of the fine twitching in my hands that is the worst. I can't believe that I might have to accept this twitching as being a part of me now. I've had anxiety problems most of my life but this twitching has to be the worst and is really feeding the anxiety so as you can see I'm stuck in a place I don't want to be right now. I'm waiting for the day where I get out of bed and find a leg won't work or I can't turn the key anymore, I'm just waiting for this to happen and it's making life miserable.Garry
 
I've been twitching on and off since June and also lost quite a bit of weight, which I attribute to anxiety. My tendons seem quite prominent in my hands these days, and if I look closely, I see dents near the wrists where I know there weren't any a few months ago. I also have constant internal buzzing (actually, my left leg is buzzing right now as I type this), numbness, stiff muscles -- you name it! But since I had all the testing (MRI, EMG) and have been to/spoken to my neuro numerous times, I refuse to believe any of this is related to the dreaded disease (or any disease for that matter). Try not to wait for the day when you can't pick up your leg to walk. Instead, be grateful you don't have "the disease that shall not be named" and remind yourself that stuff with BFS tends to come and go. I'm sure your anxiety about the twitches is contributing to your other symptoms. Let go of the anxiety and you'll likely feel tons better. God bless!
 
Hi Gary,as an old time anxiety victim I perfectly understand you... I still sometimes get in doubts - what if this pain in my had is sinister? what about cramps in the foot?and then I remember that I am sitting worker and typing 10-12 hours per day... and no weekends...etc. and things become more clear for me :)) When life space is between bed and working desk with some ocasional walks with the doggie...it is wonderful that I have only mild BFS and nothing more...So becasue you say that anxiety was your companion for years, maybe it is time to give it a bit of attention because it never goes away by itself, unfortunately...(as for magnezium, it sometimes helps and sometimes not as far as I can see. We BFS people also might have certain damages in complement system preventing our bodies from efficient Mg digestion. However my Mg was always perfect... I have subclinically low Ca for years (slightly lower that lowest lab limit in the same lab), and nobody really knows why (parathyroid seems to be Ok), so... I just find some rest in the fact that my mom has the same cramps and she is full of energy 23 years older than me ;)))
 
Hi AgainI'm getting worried about the symptoms in my thumb. I've read about perceived weakness, but this is pain in my thumb when I try to grip something tightly which is quite thin, a key for example. To me this amounts to weakness, yes? As I move the thumb around I feel like a pain in the bone or around the thumb, hard to describe, and I definitely don't have the same strength in that thumb compared to my other hand. If I push the thumb against the index finger the thumb hurts and not much strength it seems before the pain starts. I do have some pains elsewhere in my hand but it's often in places where carpal isn't supposed to affect, I have carpal symptoms and more in one hand but I don't know what to make of this.This is really freaking me out. Also when people talk about clean EMGs, would an EMG which showed peripheral nerve hyperexcitability be considered a clean EMG? I'm confused about people who are twitching but say their EMG is "clean".Thanks
 
just wanted to say I have the same feeling in my right thumb. It is what it is and that is nothing. Nothing like what you are worried about anyway. I have so much more pain all over since my BFS started - sometimes I just can't believe that the body can turn on one like this. BUT - it can.... and yet, it is "benign". And thank goodness for that!
 
Strange.... I take Omeprazole too but only when I feel like my acid reflux is flaring up... I started it last year but I don`t take it very often... My throat would contract and food would get stuck and I couldn't even swallow water for a few minutes or so until it relaxed again but since taking Omeprazole it really hasn't bothered me... i haven't had a choking episode in about 12 months... I was so worried about the choking after like 8 years of it as sometimes it got worse I had an endoscopy and they said I am fine but I should take the tablets to reduce my reflux as that`s what is causing the throat to contract..
 
I would say that I don`t think the omeprazole is the cause as I don`t take it that often as I haven't been bothered much by reflux lately... Also my first hot spot 4 years ago on my chin happened and I had never taken omeprazole at that point. That chin one lasted a few months and I had the random ones all over but hey it went away and this appears to be another flare up..I think its flared up due to the arrival of my 2nd daughter, I love having her of course but I think with my routine changing slightly and with already dealing with a general health anxiety and busy at work, driving 2/2.5 hours a day every day I think its just built up anxiety and triggered this..A lot of people seem to get this with small children or new born`s and a lot of BFS people seem to have general anxiety / health anxiety.. there must be a correlation there !!Lifestyle change, new kids, busy at work, stress (even if it is slight), general concerns etc I think its might all add up and some of us must be susceptible to BFS / twitching...I am no doctor but I have read so many stories with similar correlations...Paul
 
Hi againJust after an opinion of my tongue and swallowing. Mid December 2013 I started to have a swallowing problem, I found it hard to swallow when there's no food or drink in my mouth. Fast forward to now and I have noticed that when I stick my tongue out all the way I can see a very noticeable area at the back of my tongue which, well the best way I can describe it, is missing. It's in the center at the back directly inline with the uvula and I don't know if it has always been this way or not. Just imagine if you cut a pipe in half lengthways, well that's the shape of the back of my tongue inline with the uvula when it's fully extended, like a wide groove down the center of the back of my tongue. I've stayed right away from Google pics of tongue atrophy as I know they'd really freak me out.My swallowing feels awful. Swallowing liquid is fine, food is mostly fine as long as it's not food that's too dry (had an awful time last night trying to swallow chicken that was a bit too dry) although sometimes I do have to have a couple of goes at swallowing the same mouthful of food. But when I just try to swallow saliva it feels very different to when I'm swallowing food, it just feels very hard to swallow, no lump in the throat just hard to swallow. I've also noticed that over the past few weeks my facial twitching has increased dramatically, and now with the hard swallowing sensation I've got it has sent me back into a spiral of doom unfortunately. I've also developed a non stop sensation along the left side of my tongue which I'm guessing is probably a very fast twitch, it doesn't stop at all the whole day and has been this way for weeks.So even though I seem to be able to swallow food ok, could this change in my swallowing indicate something serious? Another thing I've noticed is that I've developed a lot of jaw clicking when I swallow which also started in mid December so I'm wondering if this could be a TMJ symptom and if so could TMJ affect my swallowing in the way I've described.To recap - I had an EMG early Aug 2013 which didn't suggest MND and my clinical at the time was fine, but I've also now lost a lot of weight from my thighs, arms and hands and of course I'm scared it's muscle I've lost. The body aches and pains and joint pain is causing loss of sleep, and non stop twitching along with these latest swallowing developments has spiraled me into depression :( .Cheers
 
A quick update to my above post, I went to my GP today about a chest infection I've got and while I was there I asked him to check my tongue. I didn't specifically mention why I just asked him to check and he said it's fine. So if there there was atrophy there I'm sure he'd have mentioned something.But I'm still having this swallowing trouble with the left side clicking somewhere in my throat or jaw. The clicking isn't there every time I swallow and sometimes (rarely though) I swallow fine without the tightness so I'm confused. Yes I'm stressed and anxious, perhaps this explains the swallowing I don't know. But there's still too many other things for me that point to something nasty, especially the weight loss. The muscle on the top of both my hands that is basically inline with the index finger and thumb has lost a lot of bulk as have other leg and arm muscles. I'm really at a loss of what to do. I'm even thinking I've developed atrophy in both legs but that's a little hard to explain so I'll leave that for later.Perhaps I need to go to a gym to try to see if I can slowly start to bulk up a bit. Never been to a gym before and I'm quite slim and not all that strong, never really had well developed muscles but I can sure see that they're nothing like they used to be.Not sure where to turn next. As for today's twitching, the most annoying twitching has been inside my throat. If I really knew that this was all benign then I'd just try and accept it, just like I accept that the heart PVC's that started about 5 years ago are also benign so I ignore those and they don't worry me at all. But this neuro stuff, that's a whole different ballgame.
 
Hi,well, first of all, it is highly unlikely that you will have 3 points ALS onset at a time - arms, legs and bulbar. Sometimes it happens, but with the old people and usually this means they are put to whellchair, gastrostoma snd ventilation pretty soon (I read here about one this case happened with a fellow's grandpa or grand uncle - it took about three weeks from pretty healthy oldster playing golf to a bedridden ruin.As you may know, palms itself do not have motor musculature, so having them wasted does not mean MUSCLE atrophy. it is just a subcutaneous fat loss extremely common in our fellows. many took that for atrophy.You say you lost some of weight. Ok, should this be from MUSCLE atrophy, do you think your functions would be unchanged? Most probably you lost your weight due to more frequent urination (it happens with anxious people), you would wonder how much of water we keep in our bodies. And most probably this water is in subcutaneous edemas in our upper/lower limbs and on the face.People with the atrophy DO NOT THINK to go to jym for bulking their mass, believe me. They think 'Holy God I can not button my shirt...can not lift a cup of tea, I barely could walk... what the hell is going on?'Tightness in the throat, pain in the throat, difficult swallowing are happen to us not due to bulbar onset but just because we have reflectory spasms of throat and esophagal musculature caused by autonomous nervous system (which is completely differenf from somatic nervous system ruling our conscious motor functions). Those spasms have nothing with the bulbar onset at which swallowing reflex or coordinated operation of throat muscles is disrupted and your throat shuts under the pressure of food or liquid instead of open. In case of autonomous disfunction your throat muscles work properly but they are just tensed over the normal tonus due to stress hormones and this causes pain and feeling of diffcult swallowing and clicking sounds. People with bulbar onset of that type usually complain they barely could eat or drink something without a fight, classic description is 'it takes two hours to eat a sandwich". What you describe about your swallowing troubles does not meet typical bulbar onset in no way. You feel your throat is tight - they fail to swallow.You say you do not know if anxiety can cause that. Why then you did not to go to anxietycenter.com and LEARN about that? Believe me you would be surprised to see the whole set of your symptomes as a typical anxiety disorder.You had a clean EMG and clinical. This combination means that chances for MND are close to zero. Many anxious people develop autonomous disunctions in the wintertime due to lack of sunlight. Wait thill the April, you should be much better.
 
I meant exactly top part of the palm, Garry, i do not know right word, as English is my second language only :) This part virtually has no musculature, only tendons and fat. having fat wasting means nothing, most probably anxiety and hyperawareness.definitely 6 km/hour is a GOOD speed wor a walker (actually you could run in line with the horse walking which is very good), so I do not think atrophied legs could do something like that. Usually people in ALS complain for extremely slowed gait, feeling of heavy fatigue etc like the legs just can not move etc. Foot drop is often associated, etc.Enjoy the sun as much as it is safe for you (suppose you are in Australia :)) becasue for us it is essential. Try to get normal sleeping schedule. No matter if it is summer or winter, if you are sleeping during the day and awkening and active during night time, it can quickly alter your brain till a whole mess. I see that on my daughter and her boyfriend who both are extreme 'owls'. When they can 'owling' as far as they can, they complain for bad mood, fatigue etc.People with bulbar onset do not FEEL the swallowing is diffcult. They FAIL to swallow, you know, they say they try and absolutely can not. maybe one of 5 or so attempts are successful for them to swallow, and it feels like stubborn choking with the food/liquids. People with that type of onset have to be usually placed on gastrostoma for feeding, and this is quite obvious. They usually have speech and voice problems (they slur so much that everybody notice that and their voice become toneless, they can not change the picth deliberaltely or speak extremely unnatural scratchy tone, or can not vocalise or sing etc.).My advice would be to read anxietycenter.com site and know more about what anxiety makes to our bodies. However it may have reverse effect (you may be induced for more symptomes...) but at least it is safer than read about ALS :)))
 
Hi GracelyI sent you a PM, hope you don't mind. Don't worry, anxiety sites for me are safe and I often refer to them. I've been able to stay right away from sites about MND etc, I'm even careful about any Google searches I do just in case I end up somewhere that someone like me shouldn't find themselves at. There's even been a few posts at this site that I've quickly closed. I sure wish I never found out about MND, actually it was a neuro who mentioned it to me first, Google followed and the rest is history.The sensations and changes to my body since I developed what I hope is BFS is incredible considering this is supposed to be benign. So hard to really know what's BFS and what's anxiety, I guess that's what doctors get frustrated about too with anxious people. BFS in a nutshell on this site has also helped me a lot but still I find myself wandering off to more sinister thoughts about the disease we don't have.Thanks heaps.
 
Here I go again, sorry folks.So right now I've got cold with the usual sore throat, no drama there. But I was looking at my throat and eeeekkk I saw the uvula twitch or move quite a way to the right. I accept that the uvula and tongue are often not still and can twitch etc, but the way it jumped to the right and back again has freaked me out. And this is combined with the ongoing continuous nonstop electric type of sensation along the left side of my tongue and the very tight throat when swallowing which is with me all the time since mid Dec 2013.Can this really be benign? I don't seem to be having trouble with food and drink (food is sometimes a bit tight to swallow but I do get it down), and speech is ok too. I was doing so well until the throat tightness started in Dec and then I realised that it doesn't seem to go which has blown the anxiety of the scales. Surely after a clean EMG in Aug 2013 I couldn't have developed bulbar, or perhaps this isn't an LMD??Thanks for reading and I'd be most happy to hear back from anyone. I'm honestly starting to wonder if I should be at one of those other forums which we don't discuss.
 
Hi Garry,I was just coming here to post a post similar to yours! I started having symptoms about 13 months ago. About 4 months in I had an MRI and then a referral to a neuro. He said my clinical looked good and did an NCV/EMG a few days later. They stuck my right leg from hip to foot about 15-16 times. That is where my symptoms started with perceived leg weakness, twitching and pain. Also had some in left leg also and left hand at the time. My EMG was totally normal. Since then they discovered I was Vit D deficient like many here. So I took it at high doses would not go up so they suggested I may have absorption issues and I went gluten free this has helped a ton! For about 8 months I had major improvement in my legs and just felt more energetic etc. Anyway, I have noticed that my hands are aging don't think it is atrophy but like you don't like the look of it. I am almost 42 btw. Last few weeks my twitching is really bugging me in my hands with some sensory issues and also a few in my lips and my throat and guess what I have started with the clicking in throat also! UGH! I asked my GP at my physical yesterday and he seemed not that interested since I can eat, drink and speak fine. He did say that if it continued he would refer me to an ENT. So if it goes on another week here I am gonna go in. Anyway, I read about your story and the throat thing sounded the same so wanted to comment. You are not alone! Best to you! Oh, and I have a diagnosis of post viral CFS/Fibro. They did not say BFS, but I have all the BFS symptoms. When I started twitching etc I had a flu virus, a sinus infection and then I got a nasty orbital cellulitis infection in my eye really bad, so they think that my issues are from that also.
 
@GlowGreen, your reply didn't annoy me at all, sometimes we just need to be told in no uncertain terms to chill a bit. Unfortunately for me right now no matter how much I am trying to tell myself that my swallowing problem is anxiety I just don't seem to be able to. This swallowing problem is nothing like I've ever experienced before.@Debd41, thanks for your reply. My last clinical was in August last year and at the time it was fine. Mine now seems to have progressed into something that certainly wasn't there in August (the swallowing problem).I'm wondering what's the best way to figure out if this extremely tight swallowing is just anxiety. Every swallow feels so hard and tight and I can tell that somethings not right. The only thing that really hasn't changed is my speech so I guess that a good sign. I've also noticed that for the past couple of months my right hand has become much more stiff than it used to be. If I flex all my fingers as wide as I can the hand feels so stiff. I honestly feel like I getting worse each day. I think I probably need to go back to the Neuro to discuss the swallowing.
 
Bill. Do you mean some ales? I think I'll pass on that, the ales would play merry hell with my tachy.I also have a lot of fullness in my left ear along with clicking on the left side of my face when I swallow so maybe that's suggesting a tmj issue which might be causing my swallowing problem. It's awful how the anxious mind works, tmj is so common and bulbar is so rare and yet I'm focusing on the rare one. If it wasn't for the twitching and overall weight loss, and now the bulbar fears, I'd probably be able to lean more towards tmj. Can't see the woods for the trees.
 
Went to the neuro today, the reflexes he checked were ok, basic strength tests ok. But now that I've got this swallowing problem he's not so sure anymore and has told me to go to a speech pathologist to get speech and swallowing muscles assessed.I'm in really dark place in my life now, not sure if I'll post too much here anymore. I can't cope.
 
I agree with Bill! Keep your head up and keep us posted.I've been hanging around and following your progress because I have very similar symptoms. Every doctor I have seen is chalking it up to anxiety.-43RichyThe43rd
 

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