extreme worry and anxiety over focal twitching

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extreme worry and anxiety over focal twitching

Postby johnson84 on March 18th, 2014, 2:31 am

Hi,

To start I'd like to say that I have a very extensive history of health anxiety. Since I was a young child I've always been worried about my health and always thought I was going to die from one problem or another. For about 3 years straight I was convinced that I had a brain tumor. Moving past that, a few months ago I went researching online (about brain tumors, funnily enough) and came across ALS. I began to search the symptoms and the disease itself, and began to realize that at this point, I'd been getting relatively unnoticible body twitches for some time (maybe a year or so) without ever considering them to be anything serious. After much worry, I ended up having a panic attack one night (many more followed) and from that point on I haven't felt the same. The twitches have worsened significantly body-wide (they aren't always body wide) and my worry is a constant weight on my shoulders every day. It's gotten to the point where living my own life is a nightmare because of my worries about ALS. I even made a thread similar to this on the ALS forums asking about my symptoms. So I've decided to come here, to ask for some more advice.

I'm a 19 year old male, and very recently my twitching (which was previously body-wide and relatively rare (probably 20-40 twitches per day)) has turned into regular body-wide twitching, as well as for the past few weeks, one very focal and constant (essentially 24/7) twitch in my left calf. My right calf also likes to join in on this twitching, however my left calf is essentially going non-stop unless I'm moving it. The twitches there are all different; some are big thumping twitches of a whole part of the calf, some are little wormy feelings on the back of the calf muscle, whereas the most are just tiny little movements within the side of the muscle which are relatively rhythmic and very worrisome. Sometimes the twitch in my left calf will turn into a type of "vibrating" sensation, where the whole calf and what feels like the whole leg will essentially be vibrating, however this sensation cannot be felt from the outside with my hand like the random twitches can and is very consistent, ususally lasting for a few hours before going back to the regular old twitching. I read somewhere that these small and constant focal twitches are essentially signs of ALS (as opposed to the larger, more body-wide ones which are typically associated with BFS), which worried me even further and got me into the state where I am now; worried for my life. I went to see a doctor about my twitches, who I thought was extremely cold and treated me poorly, and although ordering me a blood test, I'm going to see a new doctor this Thursday who I will be talking to extensively, and will hopefully refer me to a neurologist.

The left calf twitch is very strange in nature; it's almost constant but I feel as if it's constantly representing itself in different ways; sometimes I will have a kind of worms-under-skin feeling right up the top of the calf behind me knee or the middle, sometimes it will be a little tick down on the left side of the calf. Sometimes the entire calf will just be very slightly vibrating. There are very short periods of time sometimes (usually at night before bed) where the twitches in my left calf specifically are unnoticible, however I'm not sure if I could attribute this to just having less energy and thus the muscle cannot produce as strong twitches, so they calm down to a point where they are very minimal and unnoticible. This isn't to say that before bed and when I'm in bed the twitches are gone; they are still very much there in the left calf specifically, just usually less noticible unless I put all my effort into focusing on them. This left calf twitch has been constant for a period of about 2-3 weeks now (or noticible for this period of time).

So I've come here to question those who have BFS to see if my symptoms are at all similar to BFS; in my mind I have a 50/50 chance of this left calf twitch being a focal twitch from BFS or the beginnings of ALS. I'm extremely worried and anything else I do in my life is consumed by the thoughts of myself having ALS. I do not have any obvious objective weakness, however I have noticed some peculiar things, such as my left leg being quite shaky after I've done some physical exercise when I stand on it, however any sort of strength tests I do on my calves or quads reveal that the absolute strength seems almost identical to that of my right leg. I've read that in 6.7% of cases of ALS, twitching is the first symptom noticed, which is the main thing that has me worried.

If anyone here could offer some advice; can BFS twitches be both body-wide, as well as constant and only in one place (left calf)? Is this common with BFS?

Any sort of help would be so so appreciated. Hopefully once I see my doctor I can get a referral to a neurologist and at least end this questioning as to whether or not I have ALS or BFS.
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Re: extreme worry and anxiety over focal twitching

Postby rutra80 on March 18th, 2014, 7:03 am

It's quite common (read on the forum and the stickies), I for instance have a body-wide twitching since over a year and have had almost constant left eyelid twitching for half of a year. Now the eyelid is fine but other twitches remained.
Go see a neuro, though most probably like most of us you will keep worrying until you do an EMG, and then for another year or two, that's how BFS works :wink:
My grandfather died on ALS. I have fasciculations since winter 2012/2013...
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Re: extreme worry and anxiety over focal twitching

Postby johnson84 on March 19th, 2014, 4:39 am

Thanks for the reply man. Means a lot to hear that someone else has had a similar constant focal twitching issue over a long period of time. Hopefully tomorrow's doctors appointment is somewhat helpful.
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Re: extreme worry and anxiety over focal twitching

Postby johnson84 on March 19th, 2014, 9:09 pm

I had my doctors appointment today with a GP. He did a full neurological exam and said everything was clean. No babinski, perfect reflexes, fine muscle tone, no weakness.

Can these things be recognized by a normal GP and not a neurologist? He did not recommend I see a neurologist however I feel that it may be necessary to put my mind at rest.
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Re: extreme worry and anxiety over focal twitching

Postby Yuliasir on March 20th, 2014, 12:45 am

jhonson,
practically GP doctors are also trained for basic neurological exam becasue it is a part of general health assesment. They may properly assess if you have hypo-or hypertonus, certain basic pathological reflexes (like babinski), may usually correctly suggest about symmetry of reflexes and muscle power.

So if you want a neuro assesment, it is up to you of course. But generally it would be most probably the same result.
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Re: extreme worry and anxiety over focal twitching

Postby rutra80 on March 21st, 2014, 5:04 am

johnson84 wrote:Can these things be recognized by a normal GP and not a neurologist? He did not recommend I see a neurologist however I feel that it may be necessary to put my mind at rest.

Generally there are rules which deny the possibility of MND diagnosing if there is no clinical weakness, obvious atrophies, or pathological reflexes. But as I said you won't find the peace of mind because you will keep reading in internet and thinking "it may be subclinical early stage and the doctor could make a mistake", so you will keep visiting several neurologists and doing EMGs until there will pass a year or two - only a time will put your mind at rest.
My grandfather died on ALS. I have fasciculations since winter 2012/2013...
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Re: extreme worry and anxiety over focal twitching

Postby johnson84 on March 21st, 2014, 5:52 am

I'm feeling a little better but not entirely - the only thing that really has me worried is the fact that my twitching is a) focal in my left calf and b) very regular (although I do get body-wide twitches as well, they are comparatively rare). It seems very unusual that a single twitch would be so constant and confined to only one place on one side of my body when almost everyone else I read about with BFS has body-wide symptoms with "hot spots" lasting only a few days. This "hot spot" of mine is extremely consistent and annoying.

I'm honestly somewhat satisfied with the result of my doctor; the way I see it is if I have MND I will notice weakness within the next few years, and if I do notice weakness then I will obviously go in and get myself checked out, but the doctor I was seeing's mother died of ALS a few years ago (which gives me confidence that he has researched the disease to a degree at least) and the only real symptom I am experiencing is this very annoying and persistent twitch. I even told him that this twitch was persistent and constant in my left calf and he told me I had nothing to worry about.

There will always be that aspect of "has he read as much about ALS as me" and it's probably true that he hasn't - I've spent hours and hours reading about it and trying to understand as much as I can about it to diagnose myself.

You're talking about sub-clinical symptoms; is this even possible? I thought a neurological examination was really the "gold standard" for ALS diagnosis because it tested for both UMN and LMN signs. Wouldn't my doctor have found some sort of abnormality in the exam if I did have ALS?

Honestly the appointment left me fairly relieved and even though this constant twitch in my left calf can be very annoying and worrying sometimes, I think it's fair to leave the majority of my worrying and panicing down to my anxiety (which I will hopefully get treated soon). I have no other symptoms of ALS whatsoever, and I think the chances of me being within the 6.7% of ALS patients who experience twitching first (almost all of whom had clinical weakness diagnosed when they saw their GP/neuro which they had not previously noticed) as well as the very small amount of people my age who get ALS (19 years old), on TOP of the rarity of the disease itself (2/100000) gives me quite a good chance of not having it.

If anyone else could come forward and talk about a long-term focal and constant twitch they've experienced before it would give me some relief, just to hear about some other stories of people with BFS similar to mine (fingers crossed mine actually is just BFS!) that would be awesome, but if not it's probably about time that I try to just block the idea of having ALS out of my mind as much as I can.
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Re: extreme worry and anxiety over focal twitching

Postby rutra80 on March 21st, 2014, 8:21 am

But did you try to figure if constant twitch is a common sign of MND? I read some findings that BFS twitches tend to be rapid (at least one twitch per second) and widespread, while ALS fasciculations tend to have a form of EPISODIC series of focal twitches every 3-4 seconds each, which spread along with the disease.
It's rather uncommon for people with ALS that twitches are their concern, mostly weakness is first. For example my grandfather had slurry speech and after a year couldn't lift his hand - he wasn't bothered by the twitches.
As for subclinical signs, it's not that you wake up with full blown ALS from day to day. First signs are subtle, but relentlessly progressing through months/years. Most often after half of a year there are many symptoms which would worry every doctor.
My grandfather died on ALS. I have fasciculations since winter 2012/2013...
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Re: extreme worry and anxiety over focal twitching

Postby johnson84 on April 22nd, 2014, 6:57 pm

So it's been about a month since my last post here and my symptoms are still exactly the same - the left calf constantly twitching. The whole leg is seemingly where the majority of the rest of my twitching happens, but it isn't consistent like the one in my left calf. My main problem is that this has been going for so long and I just want it to disappear so I can go back to living my life like I used to.

I don't know if anyone else can relate, but I can no longer relax or do relaxing things because of my twitching; it has affected my life to the point where I always just need to have my mind occupied on things or else the twitching becomes unbearable.

Does anyone know of any ways of improving symptoms? I've tried a bunch of things, my doctor told me to start taking magnesium supplements and stretching my calves several times per day, which he told me would help the symptoms (but they didn't).

The biggest problem with twitching is that because it is so constant and so noticeable as a symptom that every time you feel the twitching, your mind instantly thinks of it as something really insidious.

I go back to the doctor for a general regular checkup next week, he seems pretty adamant that I should not see a neurologist even after my constant asking for it, but I'm still unsure as to whether or not I should continue to pressure him until he gives in and provides me with a referral.
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Re: extreme worry and anxiety over focal twitching

Postby ShawnW on April 22nd, 2014, 7:15 pm

johnson84 wrote:I had my doctors appointment today with a GP. He did a full neurological exam and said everything was clean. No babinski, perfect reflexes, fine muscle tone, no weakness.

Can these things be recognized by a normal GP and not a neurologist? He did not recommend I see a neurologist however I feel that it may be necessary to put my mind at rest.


Yes, this truly is an easy exam. It's something a well trained medical student could do in their sleep. Without weakness, atrophy or problems with the reflexes many top specialists in the field will not even do an EMG. I'm fairly sure my neurologist did one on me merely to calm my anxiety.
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Re: extreme worry and anxiety over focal twitching

Postby leaflea on April 22nd, 2014, 7:42 pm

Johnson84-

Two things:

1. You say, you will most likely notice weakness within a few years if it is the dreaded one...all sources I have seen and the two who wrote the text books, have most research...quoted on this site say a few months after the start of twitching weakness would show...maximum 8 months. So...not so very long to wait. I am 6+ months in and feeling less anxious every day that time passes. I also have the vibrating sensation in the leg, drives me insane.

2. Where do you live and where did you see a doctor? I ask because I personally know a doctor whose mother died of ALS a few years ago also. What are the odds its the same guy? If it is such a small world that I know him - you can trust him.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: extreme worry and anxiety over focal twitching

Postby johnson84 on April 22nd, 2014, 11:04 pm

leaflea wrote:Johnson84-

Two things:

1. You say, you will most likely notice weakness within a few years if it is the dreaded one...all sources I have seen and the two who wrote the text books, have most research...quoted on this site say a few months after the start of twitching weakness would show...maximum 8 months. So...not so very long to wait. I am 6+ months in and feeling less anxious every day that time passes. I also have the vibrating sensation in the leg, drives me insane.

2. Where do you live and where did you see a doctor? I ask because I personally know a doctor whose mother died of ALS a few years ago also. What are the odds its the same guy? If it is such a small world that I know him - you can trust him.


Well I live in Australia and by the looks of it you live in the US, so I don't think it's the same doctor. But thanks for the help! He said within 2-3 months the weakness would generally start showing, I've read in other places online that it can take up to 12. There doesn't seem to be a general consensus on how long it should take, which is a shame because playing the waiting game for months on end regarding whether or not you are going to die is extremely difficult.
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Re: extreme worry and anxiety over focal twitching

Postby Yuliasir on April 22nd, 2014, 11:15 pm

Dear Jhonsosn, I just wonder if you have any plan for your main disorder (health anxiety)? Taking care about that in a proper way will help to draw twitches to a levelof background noise if not for sure, but quite significantly.
You are very young, and your body may heal by itself.
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Re: extreme worry and anxiety over focal twitching

Postby johnson84 on April 23rd, 2014, 1:01 pm

Yeah the doctor I'm seeing is actually a doctor at a psychology place, he's just waiting until a psychology appointment opens up so I can start with that.

But yeah, it's really difficult to just do the things I used to because of the twitching. Maybe it's all mental but I tend to go through phases of maybe a week or so where the twitching wont be as bad, and I'll think it's getting better and my outlook will be better, but then one day it just starts coming back as strong as it was before and I start to get really anxious again thinking it's never going to go away and that it's MND.
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Re: extreme worry and anxiety over focal twitching

Postby leaflea on April 23rd, 2014, 5:33 pm

So, not the same guy. But it seems 2-3 months would be the norm and 12 months would be the far, far outlier in terms of when you could expect this would progress, the odds get smaller with every passing day that it is actually something sinister. So, I this is the advice I give/gave myself...use that time to figure out how to live your life, either way. If you have the disease...what to do and how to handle it... and if you don't, how to be sure your never go through this fear again, because surely another symptom will present itself that if given enough focus and attention, will seem potentially deadly. I know this is the worst, and other fears have paled in comparison to this. But, there is a lesson and a silver lining in this. In psychology, it is called "in vivo exposure." We have now been exposed to to worst possible health fear and if you ask me, any cancer fear seems like a walk in the park. We are facing down our worst fears and hopefully learning how to cope with it. I just finished reading "A New Earth" by Eckhart Tolle and highly recommend it as a general approach to a serene life. I can hardly wait to read his first "The Power of Now." Reading etc. is something productive you can do in these months of waiting to better yourself -- No Matter What. Sure beats sitting around obsessing about a disease we do not have.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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