Pls help - Im SO SO scared!!!

[soveryafraid]

I am a 30 year old male

For about a week now I have had all over body fasciculations.  They are very random and only occur at rest and mostly in the evening.  They do not wake me at night and are less frequent throughout the day time and seem worse when i feel worried / stressed..  I went to my GP regarding this problem.  he examined me by testing my strength in all my limbs / grip etc and reflex tests.  He said I am very strong and show no signs of weakness but my knee jerk reflex was slightly "brisk" although it was symetrical so he wasnt worried (BUT I AM!!!).  He also did a "babinski" test which was normal. He explained to me that as I show no signs of weakness or atrophy, he suggests that I have BFS.  He said he would be more worried if i had pain/weakness in 1 limb.

The day after I saw my GP, I started to feel pain in my right arm. Now i am a BIG worrier.  I suffer from anxiety and I have in the past, brought alot of feeling / pains / discomfort on myself which I have also thought were going to kill me and as a result, have had many tests including a recent MRI which was normal. (although this doesnt help me as I know ALS does not show on MRI).  As I have done it in the past, I am aware that I MAY be feeling pain in my arm as a result of worrying and concentrating on it but I can not make myself twitch all over, constantly.  It worries me that this time, the pain is real. IT FEELS REAL. I have no weakness that I have noticed in this arm and I am coinstantly comparing it to the other arm.

Before all this, I have been going through months where I would feel very tired / drained for no real reason. This was put down to stress / anxiety by my doctor but it worries me that this too could have been early signs of ALS.

I am PETRIFIED.  Please try and give me some answers. My GP says if the fasciculations persist for 2 weeks, to go back to him but I cant take this worry.  

[Rachel_W]

I don't have any but go to http://nextination.com/aboutbfs/forums/index.php and they have as much information as I have found anywhere, and the ALS doctor told me that people with benign twitches i.e. he was telling me to reassure me, are no more likely to get ALS than people who don't twitch.

[Mark1968]

I would like to see study literature, or hyperlinks to it, if you have any.

[Rachel_W]

They did a long-term study of people with BFS and none of them ended up getting ALS.  My doctor did not say that I had BFS, but if I am twitching and they are benign then I assume that this is what I have (I get the cramps too).  He said that people who twitch are no more likely to get an MND than those that don't.

Also do a search for 'about bfs' it leads to a great support community for sufferers.

Best Regards

Rachel

[Mark1968]

I was diagnosed with Benign Cramp Fasciculation Syndrome (or BCFS) back in August.  BFS is basically the same thing, except to a lesser degree because you don't have the painful muscle cramping that comes along with the fasciculations or twitching of the muscles.  You can read my journal entry with the details at http://www.medhelp.org/user_journals/show/28760?personal_page_id=209232.  ;

The disease or syndrome is more of an annoyance than anything, which is definitely triggered by increased stress; so the more stress that you are under, then the greater your symptoms will most likely become.  Or at least so in my case...  Your neurologist can put you on meds to help reduce symptoms, but even under meds I am not 100% symptom-free.  The meds are basically Central Nervous System (CNS) tranquilizers.  My neurologist always stresses the point to me that this syndrome is benign, meaning it won't become life-threatening; I may have better times and then worse times with it, but it is not a progressive type of disease, such as MS or ALS.  I however, would like to see some study done in the near future to see if this type of condition lessens with age, transforms into another condition, etc., but I think that BFS, BCFS, CFS, Peripheral nerve hyperexcitability (PNH), etc. are relatively new to medical research.  Maybe we will find out more about them as time goes by.  Take care,

Mark

[BRUCE37]

The babinski test is hard to fake and no response doesn't really mean anything bad----but upgoing toe does

[Jules45]

All, I ran the Babinski test on myself using the end of a pen running it from my heal to the ball of my foot. My big toe didn't move at all just stayed there. What does that mean?

[Rachel_W]

They often want to do an EMG to make YOU feel better as if you don't have it wouldn't you still worry?  I have been getting twitches but also weakness, however after 3 months I went to a neurologist who specialises in MND and I don't have clinical weakness (there is a difference), also negative Babinski and normal reflexes.  He was convinced that I did not have anything and did not want to do other tests, but wanted me to have an EMG just to make sure (but reassured me that he wasn't expecting to find anything).

This was Monday, and I had my EMG/NCV today (he did the EMG)... all clear!!!  :)  He did 2.5 limbs and then did my tongue because I asked him to.

So, even though I have some speech issues (that I notice more than anyone else) and a feeling of weakness in my arms and ankles, it turned out fine and he thinks that it is all the anxiety that I have been putting myself through.  Anxiety can do ANYTHING except fake EMG and CLINICAL WEAKNESS...

Hope this helps.  Get the EMG done, it WILL make you feel better.  I even asked him if it could have been too early and he said no...  apparently if you are already feeling symptoms, then the EMG will be abnormal.

[soveryafraid]

UPDATE: I called my doctor who gave me the number of the neurologist. I saw him last Thursday and he basically dont the same neuro tests. He said my reflexes are "very slightly brisk" but said he considers this completely normal and puts it down to me being so worried and all the adrenaline constantly pumping round my body. After the examination, he also told me I DONT HAVE ALS. He told me he has seen around 40,000 patients in his career and I simply do not have ALS symptoms. He was a very professional, obviously very experienced neurologist. He told me he would do an EMG to rule out anything else, not ALS as he said "you havent got that". Now this made me feel a bit better but it worries me that he still wants to do an EMG?

[nursekate]

I have been reading too.  I think....not sure....but think... that the labs should be off if it is MD of any kind.  If your muscle atrophies....the protein has to enter the bloodstream....and your albumin level should be high. (3.5-5 is normal)  I also just read that faciculations at rest...at least early on...is a sign that is it is benign.
Work really hard to rest in these things....I agree...ALS is a SCARY proposition...not one any of us wants to face....but worrying about it when all signs point to something benign is a waste of your precious time.  I wish you the absolute best, and I believe that you will find that you are healthy!  

[soveryafraid]

My Babinski is normal Bruce (down big toe).  Im still so so scared though. I keep thinking that I may have early onset ALS and the babinski may not yet show? Also, if it was early, I guess the EMG would not show abnormalities either? This is the worst time of my life!! Its hell!!

[BRUCE37]

I dod the same thing, but what I've been told and seen on-line is that if it is ALS causing the twitches, then you would likely be experiencing other symptoms as well. Also, the emg and ncv would show abnormalities if ALS exists. One more thing-----the babinski test is nearly impossible to fake and from what I've learned is a major telling point for ALS. Do you know what it is? If so, try it on yourself. Big toe up bad, big toe down good!

[soveryafraid]

Also Bruce, the pain is not like cramping, its more of a dull ache weird feeling.  it varies alot and sometimes is not noticeable.

[soveryafraid]

Thanks Bruce, your words are kind and reassuring.  I have an appointment with a neuro this Thursday.  Still very scared but calmed down.  Went back to my GP who reassured me, said he would bet his car I dont have ALS!!!  He re-examined me for weakness / atrophy and said I have none of either.  My twitches do seem to get worse when I am worried or stressed so im hoping and praying this is the cause.  It worried me that I may see the neuro, get the all clear on the tests but then develop weakness later down the line. is this possible?  I am constantly checking and testing myself for weakness and or atrophy.

Thanks again Bruce.

[BRUCE37]

Calm down, ok, I know this won't calm the storm, but I have had the same(plus alot more) happening with me for almost a year now. Been to the experts, they chalked it up to stress, also. I've had emg, ncv, babinski 3x, mri, blood, ekg, etc. From what I've learned, ALS doesn't not usually have pain as a symptom unless its cramping from denervation in a muscle. Also, that your babinski was normal is a good sign. You've come to the right site, though. There is a lot of wisdom on here, and I've been to the overwhelming majority of ALS sites on the web. You need to go to a good neuro and have emg and ncv tests performed just to reassure yourself. They will almost surely do the strength and reflex tests(babinski) again. But the emg is the tell-all. And again, I'm not speaking on what I've heard but on what I've been through myself. And no offense to your gp, but I wouldn't go back to him on this, as he should tell you this is not his expertise-----also, fasciculations can last for years, check out other sites and you will see what I mean. But weakness, not being tired, but weakness is the hallmark of ALS. And the fasciculations being all over, like mine, is consistent with a anxiety-related diagnosis.