Anxiety About ALS Despite BFS Diagnosis

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Yes...he agreed that those cases, when EMG is clean and patient progress to ALS, are very rare even for him - and he studies this subject very thoroughly with many and many patients. You are fine. This info was only to demonstrate nothing is for sure. You can die even during apendix surgery, however its maybe 0,001.The sentence I quoeted means that in some cases fasciculations (as result of hyperexcitablity) precede real neurogenic damage, also ALS. This is theory for those unfortunate cases, nobody knows it for sure.PS: You can ask this doctor yourself, he is very nice and always /in my case/ reply to emails.
 
ok what arron said but that isn't completely true!There is no difference between als and bfs twitches + a clean emg does not always mean no als. Als isn't a twitching disease but it is one of is major symptomns!
 
Ok, you are freaking me out!I havent had an EMG yet and now I am super scared! I have had twitching in my left arch usually same spot for 2 months it never goes away. I sometimes get it other places (other foot, calves, shoulder blades, buttocks, what feels like tongue) but it is mostly localized in left arch of feet.Bascially what you are telling me is that b/c it is localized it could be a good chance it is ***? Unlike most of you I havent had the EMG, just a clinical that seemed ok, but from an MS specialist. It has only been 2 months so I have to wait for a year until I will feel less anxious of it? I am 33 yr old female. What is the % ? Someone help!
 
Thanks RainCatI just wish I was further on into it like you. B/c it has only been 2 months and on this post it says btwn 2-9 months . I just watched your calve moving all over, did the arch of your foot do that too? You said when you were on them all day, what about when your not? Mine does it all the time!I am getting an EMG on the 23rd, but now I am so scared! I usually come on this website and it calms me down, but now I feel anxious again!
 
Oh boy... Now that's a pig of discussion going on here.OK, just to sum up the clear facts most specialist seem to agree with... please do correct me if I got something totally wrong:1. **S in general: Possible, but not a major death cause compared to let's say cancer.2. **S onset without the neurologist having suspected it after the first visit (even without EMG) : strange.3. **S onset despite clean EMG: Unusual, but possible.4. **S starting with twitching (not further specified) as the first symptom without nothing else for several months: Rather unprobable.5. **S starting with GENERALIZED twitching (the hit-and-run-kind) : Extremely unprobable.Additionally:6. Twitches in both calves as a hotspot: Commonly found in patients with confirmed BFS.So, most of us can fortunately describe their condition as a combination of the aspects I just mentioned. A combination (e.g. generalized twitching PLUS neuro saying you're okay) makes **S even less probable. However, if we drive our ifs and buts further, we'll end up creating a new, more vicious type of **S that behaves completely differentely than the normal version... one that hides from doctors and examinations, but eventually still ends in the same deadly way as normal **S. The fear will drive us crazy, even if the disease actually exists entirely in our minds and has never killed anybody. Of course I am as scared as most of you, I do still have real fear of **S now and then, although I actually know that there is no reason for doing so. I do not know when I'm going to get over it (*beep*, my left hand feels kinds strange since yesterday - or maybe it's my mind playing tricks on me again). Well, the statement above is an attempt to deal with alle these questions using rather logic rather than emotions. It is indeed strange that I can somehow calmly take part in discussions like this without panicing on the one hand, but still get anxious and scared of **S in an hour or two on the other hand.ySplendidCrafts9, I've got almost the same stuff as you: 22 years, male, generalized twitching but with hotspots in calves and thighs, started 2 months ago. No EMG, however the clinical exam was OK and so was the NVC. Well, I too don't really want to wait for a year until I can be sure that everything's fine with me...
 
Blinza said (or his doctor said) that none of these patients had twitching all over...it was ONLY localized twitching.Also, BFS is quite common. There is nothing that says that these 2 out of the 100s-1000s that this doctor has seen just had BFS and then "got" ALS.There are random reports of people having twitching for 9 months or a year and then "getting" ALS, but those odds seem about the same that any one of us will get ALS tomorrow and start down that road to hell.Twitching in Calves = normal BFS (I NEVER twitch in my calves)Twitching for a year + with no weakness = BFSTwitching all over your body randomly + hotspots = BFS NOT ALS!There are patients that go see the cardiologist and get a clean bill of health and then a week later die from some random rhythm disorder of their heart...but they would have died no matter what. Of the thousands of people that have ALS, I bet a few had BFS too....but they are not related. Granted there are more rare Nuero diseases that can cause some twitching, but weakness is a big part of most of those diseases.Don't worry and don't let subsets of subsets of subsets of patients freak you out....there are 5 BILLION people on this planet and a few are going to get double random stuff to happen to them...then some doctor or scientist is going to write a paper on them...then someone on the internet will become an expert on them and...well, you know the rest of the story.Good luck (this coming from someone who has a decent amount of arm fatigue, no twitching in the calves, quite a bit of perceived weakness...but, twitched for 1.5 years now, 2 clean EMGs and enough random twitches to keep me sane)Scott
 
like one or 2 twitches in a certain place and then stop?I have my calves twitching every second of the days and those hit and runs all over my body
 
If you are twitching, and the twitching is due to als, you WILL NOT have a normal emg.....it is impossible. Now there might not be enough "evidence" to dx als, but you will have abnormalities on emg exam. If you twitched for any length of time and had a normal emg, relax and get on with your life. If you've twitched for any length of time and do not have any signs of muscle weakness, get on with your life. There are a couple of exceptions in the literature, but just a couple. So remember, just because you have bfs doesn't exclude you from getting als, but it doesn't increase your chances either. We are just like the rest of the general population in that regard.To me, this entire post is a waste of time and anxiety for the board, but I will allow it to continue. That said, the claims that someone will bring the "truth" to this board if someones asks for it is laughable. All of us here, as a collective body, bring the "truth" to this board everyday. If bfs was a precursor to als, there would be numerous examples on this board by now......everyone here should take comfort from that "truth".Take care,Gary
 
the problem with my two emgs is that they did not want to stuck the needle in my left foot where a twitch 24/7 since 3,5 months now. But I guess it is not necessary to do so if they test the lower and upper leg muscles....!?
 
Post deleted. I was too mad to write anything. All I can say is; if this site doesn't seem to give you the WHOLE truth and you think all we do is lie about stuff to make it sound better, (FreddieTheFox and Savanturn) then LEAVE! If you think we're only telling half truths, then by all means, please quit your membership and go become a member of a site that provides the whole truth that you think exists out there.
 
Well one thing that gives me comfort is NO ONE HERE NO ONE has come down with ALS. If you have followed me you know I know 2 people very well that died of ALS. One didn't have twitches until 2-3 years after his diagnosis. He had it 13 years. My moms BFF husband had the twitching first. His twitching would go from the shoulder diagonally to his opposite hip. This went on a few months NOT a year before the weakness set in. However, she said he was complaining about his shoulder before the weakness but thought it was from doing yardwork. So he probably had weakness before he realized what it was. The ALS people are very quick to say this twitching thing is overrated. From what most of them have say if they did notice twitching first that it wasn't long before the weakness settled in which was ultra rare. I know we have all read from googling that some ppl twitch for a while but they never specify how long and if they had EMG. I also heard from an old timer of the ALS board ( I went there when this first started) that they have actually had to kick ppl off the site for lying about having the disease and some of those people said oh I had widespread twitching.. He told me to be very careful about what I read and said some people are really sick. I thought what a thing to lie about and I thought... I hope the karma bus doesn't run them over.. BEEP BEEP.
 
Yep - **S is not a disease that goes undetected for years. I didn't even have an EMG - no way I'm going to make them stick needles in my legs just because I'm scared. I guess I'm more scared of needles than of **S, lol. But nevertheless I believed my neuro. Let me briefly show you the dialog between me and him. Right now, two years after it occured, I can even laugh at the whole situation back then:Neuro: "OK, so, this twitching... Are you a bit scared of these symptoms?"Me: "A bit? That's a hell of an understatement."Neuro: "Oh... do you have something specific in mind that you're afraid of?"Me: "Yes. **S."Neuro: *laughs* "Oh jeez, one more. OK, listen up, I'll check you for **S-symptoms just to calm you and I hope it will help you regain your peace of mind!"After that he did a series of reflex test (move this, move that, etc) and then we were done. No **S, and no **S it was. I'm still here :)It might sound a little crude, but: It's way more probable to have some evil type of cancer that doesn't show any symptomes until it is too late. Here in the German media nobody ever mentions **S - everybody keeps on talking about heart attacks, strokes and cancer only. To be honest, I do not know anybody who has **S or whose friends or relatives had or have it. Actually, nobody I talked to so far even knows what **S is... I always had to explain it with "You know Stephen Hawking, the paralyzed scientist?"Well then, folks - cheer up a little!
 
I can tell the exact same story. No EMG but a certain neuro. I recall he said something like:"I had another case like you a few month ago. He insisted on an EMG, but it was all clear. He even bring along a video of his twitching, I had to watch..."It was more than 3½ years ago. He was right, so far - who knows for SURE.... just kidding :LOL:
 
My neurologist who did my EMG and took one look at me and said "You do not have ALS". This was before the exam and before the EMG. Of course I didn't believe him. 2 years later I am still here stronger than ever.
 
When I was at the neuro's, I brought all sorts of blood analysis results and stuff with me and spread all of them on his table, letting some of them fall on the floor because my hands were trembling with fear -.-
 
I decided to check in. I log on here once every few months or so. Things don't really change much, but that's not a bad thing. About the best advice I could give is to trust your doctor and if you don't, go to another one. At some point, you have to trust them or fear of "you-know-what" will drive you nuts.The fear and anxiety is the worst part. I put off medical attention for a while simply out of fear of what I might hear. That was a dumb move...it just prolonged the fear, anxiety, and sleepless nights.I went to the Washington University Neuromuscular clinic in St Louis. I had a clean EMG, clean clinical, and two other tests where they shocked me...I forget what they are called. Thank God, they were all clean. The doctor told me I was fine. He said he couldn't guarantee I would never come down with something; but he said he my chances were no better or worse than anyone else. That was it for me. I put this stuff behind me.2 years later, I still twitch. In fact, I've been twitching a lot lately. Honestly, it is still pretty much like when it all started. If I drink too much caffeine, or if I don't sleep well, or if I drink too much alcohol I twitch a lot worse. BUT...I am fine...my muscles just twitch. At some point you have to put it behind you and get on with living your life. Best of luck and I hope you find peace soon.
 
Jeffrey, I second on that :)I had a nasty hotspot today, somewhere in my left arm. So what? It twitched for a while and was gone, like it happens to all hotspots. I've been twitching for somewhat over two years now, too - and guess what? I'm feeling fine, nothing has changed. In my case I can't even relate the twitching to alcohol or coffee, it seems just random.As long as nothing changes dramatically (what would be EXTREMELY unlikely) I just ignore the twitching. I haven't been to the neuro again since my first and only visit two years ago and have barely mentioned it to other doctors.
 

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