Newly Suffering with BFS: 10 Months

[xavierjones]

Hi all, I have joined this forum a little while ago but this is my first post. I am 36 year old male and have been suffering with what I have been told is BFS since the month of February 2012. I know that many of you have been suffering for many years, but although its been only 10 months for me I can say that it feels as if it has been 10 years already. Although I have read about BFS I just dont understand this illness and how it actually starts and why it doesnt go away. I would liek to share some of my symptoms, tests done, fears and evolution of this ''illness'' ... The first symptoms that I had were twitches (fasiculations), I had been having them in several places (calves, thighs, ass, arms, shoulder blade) ... I had an EMG done in April and it was negative, I also had an MRI done in July, which was also negative. Since August, I started having fasiculations in new places (eyes, fingers, foot and the one I fear the most the toungue). I went see my neurologist for these twitches and he says that they are benign (for now, as he always says) ... Since the last few months I have been having bigger jerks on my arms, legs and other places and I have been having different kinds of twitches in the eyes which is really not cool. In addition to this I have been having throat issues (hard time swallowing and spitting a lot of phlegm and feel like I have constantly something stuck in my throat and trying to clear it) and went see an ORL (throat specialist) and he said that I have a throat tendonitis, which I never heard of ... for the phlegm he doesnt know at all ... He also noticed my toungue twitching and told me that I should have it checked out as he knew someone who had this and had the disese that we all fear (*ls) ... I know that you guys are not doctors, but what do you think of all this ... does it sound like bfs or the other beast ... Yes I am concerned and fear the worst, but I do control my anxiety quite well ... The things that bother me the most are my throat feeling, phlegm and toungue twitches ...Thanks for your time guys and I look forward to any responses and help if possible as to what I should do next.Will

 

[RockSolidGuy89]

sounds like a classic case of bfsi understand the fears man, it's hard to be rational when you get tongue twitches and have weird swallowing issues etc but just search this forum and you'll see so many people have gone through the same10 months with widespread fasciculations + no clincial weakness + a clean emg = 99.99% that you have bfs and nothing in life is 100% but you're as close as you can gethowever, I have similar issues to yourself and I get anxious too, all the evidence says we are ok but the temptation is to be freaked out by the weird symptomsdon't worry about what the throat doctor said, lots of people here have had tongue twitches and are fine, yes we may perceive tongue, throat or swallowing issues but can you eat and speak and chew your food and swallow it? on top of that can you touch your back teeth with your tongue and tent your cheeks - if you can then you should be reassured, but even this self-testing is a bad idea, we have to try to get out of this cycle of anxiety and need for reassurance, it's an incredibly difficult thing to do when we get weird stuff happening, twitches and swallowing issues etc. but the truth is that people with the disease you fear do not present in the way you describe

 

[Gracer]

Hi,actually I am watching this forum for about a year, and seems like we all go through more or less similar picture. first single twitch, in few weeks widespread on-off twitching, then other symptomes (often sensory), then a syndrome we all take for bulbar issues (which might in fact be so called neurogastral syndrome common in psychosomatic diseases), then it might be cramps, dizziness, call whatever. The course of further condition ususally depends on a person, but in fact it may last for years and even decades without significant affecting our abilities.Phlegm in the throat in our cases is mostly due to that neurogastral part and due to condition called GERD. GERD or reflux disease is also highly assosiated with stress and anxiety and it demonstrates as girggling sounds in the chest, tightness and pains in the chest and esophagus (sometimes spasms are VERY painful and even taken for CHF), usual heratburn (not so often), pain in the throat, sore throat (because of real chemical burns caused by your stomach acid refluxing), phlegm formation and coughing. Coughing after meals is very common and could be really strong. Due to neurogastral syndrome and GERD the throat is hypersensitive to any stimulus and therefore it is usually overproduction of mucus and saliva due to stimulation it gets from autonomous system (which is running high due to stress hormones). Combination of hyperproduction and hypersensititvty to produced secretions causes coughing, spitting, frequent swallowing etc. We usually complain for swallowing problems, lumps in the throat, hair in the thoat etc. (sensory symptomes caused by hyperexcited throat nerves), so it is very commom and usually comes in a few month in BFS, so looks like it is withing your picture and timeline.as for tongue twitching - we have many people herer with twitching tongues, and if you need to check it - of course go to neurologist, not to LOR doctor. I am sure your throat doctor had seen your tongue placed far out and twitching because of stretch - and in our condition with hyperexcitation it could be noted of course. Neurological check for tongue twitching is a bit different and again - many our fellows have that and still are OK.

 

[xavierjones]

Firstly thanks to you both for the responses (petrifiedguy33 and Gracely).I still dont understand this illness and am still worried for the worse. I am seeing another neurologist next week, I guess to either try and put my mind at ease or to know if I do actually have something worse than BFS. My symptoms are so random, these last few weeks on top of my non-stop tougue twitches, I have been having so many twitches in the eye lids (upper and lower) and have this ''sticky eyelid'' feeling and when it lets go the eye lid twitches like crazy for several secoonds ...on and off... on and off ... anyone can relate to that? Then today, I have been having this twitch in my right arm (near the elbow) where I dont really feel it but I do see my arm through my shirt fasiculating like crazy ... its non-stop and as I am writting this post it is still going ... (it has been going like that for over 6 straight hours now) ... this is actually something that scares me quite some right now as I know that fasics that you can see but not really feel are actually the ones that are related to (*ls) ... I am so confused as to why I and all the people here have these problems, I know that it could be worse and this is actually one of my fears ... yes I do deal with this and I am not doing too bad with dealing with my anxiety, but never the less I dont think that I will ever feel 100% reassured until a few years have passed and taht I am still around running, ticking and playing with my son (who is only 2.5 years old) ... Thanks to all who take the time to read me and to respond to me, its truely appreciated as its not easy to deal with all of this and I find that its not really easy to talk as much about it with my loved ones as they dont completly understand and it really makes my wife sad to know that I am feeling like this ... Once again I thank you guys!!!

 

[yanyytypeyofyuserna]

I must agree with all of the above listed replies, my friend. Your symptoms sound truly like BFS. Your symptoms sound exactly like what I've been experiencing for the past seven months. I have mega-twitches all over, and I have many other weird, inexplicable symptoms. This is , by far, the weirdest thing I've ever encountered. After seven months, however, I gotta' believe that I'm really O.K. Time to move on!

 

[Gracer]

ha, so you are also a young father!then welcome to the club of a buch of fellows who are young parents here and have BFS partly because their sleep is deprived, they themselves or their wives suffer from bad mood (you would wonder how often postlabour mood changes affect not only a woman, but a man too - just becasue of inducing), are worrying for the life of the baby, for money, for the place to live, etc. etc.There are several typical cathegories of BFS sufferers (it looks a bit like Chinese Emperor Zoo description) - an overall anxious people, students (with a special subgroup of medical students), healthcare professionals, athlets or people doing heavy sports for good health (how ironically!), young parents or even a combie of all that )). So your case seems to be quite typical.As for the twitches lasting for hours... well hotspots can last for weeks and month, not only hours. And they still do not harm a muscle itself.

 

[TheShadow]

Hello WillAbout visible fasciculations that can see by clothes- i got few days ago - 2 days not stop fasciculations above knee visible by clothes.You said "as I know that fasics that you can see but not really feel are actually the ones that are related to (*ls) ... ". I was read oposite sentences :that if You see fascics then you should be happy, because in this bad illness about which You worry fascics are almost invisible and doctors sometimes use some special strobe lamp to see.Now about tongue: when i was on last visit my neuro and told him that i start get fascics now on face- he warned me "can get it even on tongue". But i understand your worries. I also fight with affraid.Regards!