Physician Experiences Twitching After C. diff Infection

Hi!I am a 36 y/o physician and started twitching about 5 months ago. First calves and feet - internet search - scare - then generalized. I had a Clostridium difficile infection (antibiotic associated diarrhea with a special bug) at the end of 2007 and treated myself with metronidazole for a week. Afterwards I had the fasciculations. I had all the MS and ALS scares and finally went to a neurologist, who said that generalized fasciculations strongly contradict any severe disease (probably in the sense of not having any severe symptoms as atrophy and weakness). As I also have a constant painful spot on my forehead (neuralgia) and having my limbs fall asleep quickly (when crossing legs, holding something for long, etc) I also ruled out borreliosis (Lyme disease) by lab testing. Because I had post-infectious diarrhea for 3 months I also ruled out malabsorption (sprue, celiac disease). VitB12 and folic acid are fine. My other lab is perfect.Well, in March I experienced tongue fascics and it scared the living hell out of me. However, sometimes I get them (maybe 5 times a day), sometimes I don´t have them for days. Else, I am twitching all over the place with pronounced twitching of feet and calves - but also face, thighs, arms, abs and even sphincter. Well, after 5 months of fascics without weakness, I made an appt. for an EMG, just to be VERY sure (still to come). However, even if it is "only" BFS, which is highly likely, it drives me nuts sometimes. It doesn´t help being a physician (only makes things worse sometimes), especially because I am double-embarassed seeing another physician for something most people would think is hypochondriasis. BTW, I had a depression years ago and an anxiety disorder.However, I found 2 publications about >200 ALS-patients and their initial symptoms (if anyone likes to know, I can cite them). The bottom line is quite positive for all of us with an ALS scare:One study reports that only 2% of ALS patients have fascics alone at first presentation. The other study states appr. 7%. However, about 4% of these patients had not noticed that they had weakness/atrophy. Meaning there are 2 studies that support each other that only fascics are a extremely rare event in a rare disease. Decreases the likelihood of suffering of that from appr. 2-5:100.000 / year to 2-5:5.000.000 (if you are <40 years, it decreases it to 1:10.000.000 - well, still better than winning the jackpot lottery And one last question of my post: What is the status of the online-survey here? Can I be of any help (I have quite some experience with handling and evaluation of medical data, I conducted numerous medical research studies myself)?SincerelyMTT

Have couple of qustinse for you:In this studies 2% or 7% only fascics patients – did they had normal neuro exam and normal EMG ? When other symptoms showed?Since you are a phisition. How would you check you bulbar muscles. Would neuro exam or EMG show abnormalities or may be ENT specialist can do it ?

I don´t know, whether they had a normal or pathological EMG, I could look it up, but I´m pretty sure, it wasn´t normal. There is only one published case in the entire literature, in which a patient with a supposed BFS didn´t have BFS, but ALS, although the EMG was normal. He progressed into a clinical ALS after 1 year. However, he was 70 and had severe twitching and cramping.I would never check my bulbar muscles. If you can eat, drink and you are not wasting away, you don´t have a bulbar problem.

Great post, a must read. Anything else you can get from those studies would be great also.

Instead of progressing into ALS, isn' it more likely that this 70 year old man developed ALS independently of the BFS?

What´s the chance of somebody having first BCFS and then - shortly after - ALS? This is why they relate it to each other.That said, it seems that this is extreeeemly rare as it was only published once in the entire PUBMED. I think the bottom line is: if you´re twitching without atrophy and real weakness, you have to wait for 1 year to be a 100% safe!However, I would like to know the real incidence of BFS. One paper says >1% of the general population (and only the scared end up here?!)Who knows?....

Yet again, we are taking good info and twisting it into something that can be negative. Hundreds of people on this this board have had hundreds of EMGs and neuro consults. Without exception they have been told that twitching is NOT THE PRESENTING symptom of ALS...It is true that people with ALS develop twitches, but twitches do not mean ALS. IF YOU HAVE HAD A CLEAN EMG YOU DO NOT HAVE ALS...IT DOES NOT MATTER IF YOU TWITCH ALL OVER. After fighting this ALS anxiety for over a year, I can tell you that most of the neuros do these EMG's for peace of mind for us. My Neuro is a top flight doc (Vanderbilt Neurology/Med School). He told me that if twitching meant ALS then we would all be doomed! EVERYONE HAS TWITICHING...Just because you twitch does NOT increase your chance of having ALS. Please, stop focusing on one physiological aspect of your body. I am telling the truth, if you or I had ALS, it would not be the twitiching that was bothering us. A doc here in my town was diagnosed with ALS 2 years ago. How did he know something was wrong? It was not twitching! He knew there was trouble when we could not even squeeze a blood pressure cuff! The only way to get over this is to quit making everything your body does relate back to ALS. If you had it, you would NOT have to come on the internet to find out, you would know it!AL* symptoms (AGAIN) are CLINICAL WEAKNESS, CRAMPING, ATROPHY and SPASTICITY. An EMG will demonstrate not JUST fascics, but postitive sharp waves and fibs. Facsics alone mean nothing diagnostically unless they are accompanied by other issues. After 15 months of this worrying, I can tell you that if you do not move on, the stress will cause you more trouble than "imaginary ALS" ever could. Take it from someone who knows. You can not "put AL*" out of your mind. You can put BFS and anxiety out of your mind. If your tongue were really facsisculating due to ALS, you would not have one good day and then a bad one. You would have a bad day and then another bad day and then a worse day. When we say our tongue twtiched yesterday, but not today, that should tell you something...IT IS NOT AL*!

ABSOLUTELY OUTSTANDING BACKAGAIN! EXACTLY WHAT I WAS TOLD! ALSO, THE ONE YEAR THING IS BASICALLY A "CYA" FOR CLINICALS EVALS NOT EMG'S ONCE YOU HAVE THEM DUE TO FASCICULATING! ALTHOUGH I WAS TOLD ON MY CLINICAL I DID NOT HAVE ***! CHEIF OF NEUROPHYSIOLOGY DIDNT EVEN WANT TO DO A FOLLOW UP! IT WAS ME THAT CAME BACK IN THEN SHE SPRUNG THE EMG ON ME TO GET ME OVER IT!DEEDEE

My two cents--don't get spun up over the rarest of the rare. Backagain has it right--this post has loads of good info but the temptation is to zero in on the very long-shot proposition that we are exceptions to the rule. Twitching is twitching and barring other problems, nothing more--though BFS by itself can be a real pain in every sense of the word.I don't mean to contradict anyone--I'm not a physician myself--BUT, both my neuro and a neurosurgeon told me that after "a few months" of twitching, there would be clear and obvious signs something was amiss if the twitching was due to NMD. I agree with Lovely--the one year milepost sounds like CYA for some docs. My neuro dismissed my fears out of hand after only two months. I've said it before here that he seemed ready to throw me out of the office when I persisted in voicing my fears at my follow-up, after about 4 months of twitchermania.Finally, my neurosurgeon told me that if I have to "think about" being weak or having atrophy, I'm not and it ain't.Mark

APPLAUDING MARKC and another ECHO from my NEURO! Esp when it came down to the EMG and having twitched for 4-5 months. She told me at 3 1/2 months and a clean clinical no ***! BUT anxiety got the best of me and I worried like NO END and soo she threw me in for a EMG b/c she KNEW I'd keep coming back for more..I dont know why she didnt want my money??? Is it not spendable??? LOLAll in ALL she did tell me and she was very compassionate about it thay she wanted to rest my fears and give me peace of mind so I could enjoy my pregnancy. She was great!Lovely

Are "generalized" fascics regarded as twitches in two or more muscle groups?

mtt0915 I don't mean to sound as though I'm making any judgements here as you are a physician and work in a medical field and would therfore know much more about the onset of neurological problems than I would.However your story does read more of somebody who has suffered from mild post viral syndrome symptoms and combined this with severe anxiety, as you said you suffered from an ilness before the onset of your symptoms and you have suffered from anxiety related problems in the past. Your symptoms for me don't read as being consistent with BFS and seem to fit more into a CFS pattern. Like I said I could be wrong as I'm not a doctor but I'd be a little surprised if a neurologist hadn't of brought CFS to your attention in the past

uber: Thanks for your post. Being a physician doesn´t make you wise or fool-proof in any way and I am happy about your comment. I guess, CFS is "chronic fatigue syndrome"?The onset of the painful spot on my forehead was appr. 1 year ago, before the entire infection. 2 years ago I had an neuralgia of the occipital nerve for 3 days. I guess, the painful spot (when lightly brushing over the skin/hair) is often associated with depression and has probably nothing to do with the other symptoms. Also, my limbs falling asleep was before the infection. However, the fasciculations began after the infection. Why is it not consistent with BFS? Doesn´t twitching 24/7 alone suffice to diagnose BFS? Is CFS (if "chronic fatigue") also associated with twitching. BTW, I am not very tired and my sleep is undisturbed.MTT

CFS is chronic fatigue syndrome, in your initial post it seemed as though you would of tied into that more than BFS.However twitching 24/7 doesn't warrant a BFS diagnosis, as muscle twitching can be attributed to other more common problems. In your case a likely cause (considering your medical background) is anxiety related. I think you could argue that twitching without any obvious cause could be diagnosed as BFS or non specific fasciculations but some neurologists that I know often compare BFS with CFS in the sense that the symptoms tie with depression/anxiety so closely that they don't think BFS or CFS is a neurological condition in its own right.I think what is important is to study a persons medical background and pattern of symptoms, in paticular from their onset in making a fair diagnosis of any neurological condition. In your case (again looking at your background) I'd have to asume that many neurologists would suggest anxiety as the cause of your twitching. Years ago I suffered from depression and occasionaly had neuralgia pain and when you say your "limbs falling asleep" when you cross your legs or hold something for long sounds very much like muscle fatigue which is another depression symptom, although when you say falling asleep I'm not sure entirely what you mean so you may need to elaborate.As far as CFS is concerned, I've met people that have been diagnosed with this condition, some need to sleep constantly and some have vague symptoms such as muscle fatigue, highler levels of anxiety, sensory problems etc etc. Simply put, there is no clinical diagnosis for BFS, if your pattern of symptoms don't fit any serious neurlogical condition such as MS or ALS and tests for everything else comes back clear then some neurologists will say that "you are suffering from non specific fasciculations, commonly known as BFS" whilst others say "you may be suffering from post viral symptoms which is commonly known as CFS" whilst the majority of neurolgists will say "your symptoms are consistent with depression/anxiety related disorders". The line between these 3 conditions is so thin that for most sufferers on this forum, either could be correct but considering that most people on here have suffered from or are suffering from extreme forms of anxiety then I'd have to assume that a huge majorty of people who come here are experiencing anxiety related symptoms and not BFS.Then again I'm not a doctor and could be totally wrong

Twitching often develops after an infection. Twitching sometimes develops for no reason at all. PNHE is a common diagnosis. I have been down this road for over a year and finally got a grip on life again. BTW, this board is very helpful early on, but in order to recover completely you have to break away from this board as well. Not totally but significantly. I stop in here to just help reassure new posters, but I stopped reading the archive posts and all the symptom posts. I never noticed a tongue twitch until I started reading about them. Suggestion is a powerful tool.

Hello,I read here that cramping and spacicity are with ALS, I have twitches, cramps and sometimes my arms, fingers move brisk so does this mean that I'm more likely to get ALS??? After 6 months of twitching?