Crippling ALS Fears Resurface Again

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BarbiePetals

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When I left the neurologists office on May 7th I felt great. I was over my ALS fear and the twitches didn't even bother me. Well, now I am back in tears. I broke down in my husbands arms yesterday not knowing what else to do. Now I am convinced I have a brain tumor. I started getting these harder twitches that move a limb or my foot or fingers. They almost feel like jolts. Again they only happen when I am in a relaxed position but I am terrified. Of course I went to the internet and muscle jerking and twitching are listed as brain tumor symptoms. I am going to my family doctor tomorrow to request an MRI. I can't take it anymore. When one fear disapears another one pops up. Can anyone give me any advice? I don't know how to get over this.
 
When all my troubles first started I first thought I had a brain tumor too... or worse! This was before the twitching even came on... I was having sharp sudden headaches and was completely freaked out and convinced I had a brain tumor and that it was going to be the end! I made an appointment with my doc and he sent me for a CAT scan. I then, went back to college, and about a week later received a call from the nurse at the doc's office saying that the scan came back abnormal, but not to worry it was probably benign, and she couldn't tell me any more because of HIPPA, but the doc wanted me to go see a neurologist anyway. I absolutely freaked out and lost it, like completely fell on the floor in tears, a total wreck! My mom then called the doctor's office back and the nurse assured her that even though she couldn't tell her anything, it was really NO BIG DEAL (but what a way to set me off!)When I finally went to the neurologist I found out they had found a shadow which they told me they believed, and later confirmed was an arachnoid cyst.... which is completely benign, totally nothing and wasn't even causing my headaches. The twitching started shortly there after and is a totally seprate and COMPLETELY benign thing.Most brain tumors present with a lot of other really strange symptoms that doctors can often spot even without a brain scan. Especially if you have already had the twitching for a while, you would likely be experiencing a lot of other really weird stuff.I totally understand your worry here, anything you think could be related to something dangerous, scary or malicious will send any of us into total panic attacks, especially when you are really sensitive to this stuff like us. I am sure everything will be fine, but its always good to get checked out by your doc when you are feeling scared, for your own sanity and your husband's! Even if they find something abnormal, which I am sure they won't, try not to get too scared, because like the twitching, its probably just another nothing.
 
A brain tumour? That is hardly exotic. Why not choose Spartacus disease? It makes one want to fight against the Romans and star in Hollywood films. :p Sharp head pains, headaches, twitching, it all comes from the same place. It is in your head, but I assure it is not in the form a tumour, but rather in some special box, a gilded one, that has jewels on it as unique as you. It is the genuine you, and is so special, unique, and intrepid that it must be heard. It is you after all, and if you won't listen to yourself, who will you listen to? I don't want to minimize your suffering, because it is real. The mind is so powerful that it can create all manner of things, including mimicking symptoms of all kinds. There are countless people on this site who started with one little twitch, and then after googling, literally exploded into a mass of twitching. Now that is power, isn't it? I used to have migraines so bad that I would have to be hospitalized. I took wonderful narcotics for them, made my family suffer, but then I discovered that I was causing them myself. Who would bring upon themselves such devastation, right? I did, and we all do, in many little ways, and sometimes in very big ways. These things are signals from our special box. They are that part of us that wants to be told that we are worthy; which we most certainly are. This jerking of limbs is common in Bfs, and it happens when we get the adrenaline rushing around. I've been where you are, and there are times when, just for a moment, I find myself there, again. But, we are well, and if you listen to the voice from that special place within, you will find that your life can take a new and exciting turn.Basso
 
Hi Barbie--It's true; myoclonic jerks are very common around here (and when falling asleep, they're pretty darn common in the general population as well.) I'm like Sue; I get them almost nightly and I've definitely gotten them when I'm just sitting down at my computer or watching a movie. I should also note that I've had a brain MRI recently and there were no problems.The most important thing that you should learn from this (besides the fact that you don't have a brain tumor, I'd be willing to bet the farm on that) is you can't turn to Dr. Google for answers. We all have symptoms and they match up with hundreds of different conditions. A co worker of mine had msra last year, and every medical website she went to told her that, based on her symptoms, she had aids. She wisely didn't listen to the websites and instead let her doctor figure it out, which he did.Unfortunately, our condition is more ambiguous, and sometimes that makes the search for answers online seem all the more appealing. But the answers cannot be found on the 12th page of a google search. Listen to your doctors, if they tell you you're okay, please believe them. BFS is above all a weird condition. It throws us curveballs all the time, and if you search these boards, you'll see that there are soooo many other neurological symptoms that other bfsers have, myoclonic jerks being one of them.
 
Hi, if you look back at the posts I had made when I first came here, I had a ton of non-specific symptoms including pretty bad myoclonic jerks. I was CONVINCED I had a brain tumor which was going to lead to seizures or something. Then after i kept googling I ended up with mad-cow disease. Wow right? Dr. Google is a horrible doctor. I have been to a neuro and several other docs who all just tell me there is nothing wrong. Now, I still don't feel right, I still have muscle cramps, pain, fatigue, twitches, jerks, and an immense fear that something is wrong. But I have been going for 3 months + now. If I had ALS I would like to think that there would have been some major progression not just strange pains/cramps in my hands/legs/neck etc. Who knows. Its possible that we all will wake up in a month to find that we all have crazy foot-drop or some other huge symptom that means we all have ALS or we could all start drooling out the sides of our mouths, slurring our speech and end up with mad-cow disease, or parkinsons or... We all are waiting to be that golden "exception to the rule." Hey it could happen, you never know.BUT. The probability for getting all of these diseases is very small, so the probability that we all have it is even smaller.
 
Thank you all for your support. I knew I could count on it. I have been feeling better the last few days. I went back to my primary doctor who wouldn't even recomend an MRI cause I have no other symptoms to warrant one. She said the neurologist I went to is very good and if he thought I needed any other tests he would have sent me for them but everything has been normal so far. The jerking seems to have calmed down for now. That just really scared me. So, for now I feel a bit better until the next crazy symptom appears. I am also staying off Google. Everytime I want to go there I just stop myself and come to this board. Thank you everyone!
 

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