ALS Worries

[Tyler Patterson]

About a month ago my father experienced some health scares(luckily turned out to be nothing) but during this period of waiting to see if something was wrong my anxiety exploded. I've always had struggles with anxiety just never to this extent, during this i noticed my leg was twitching ,and stupidly enough, i googled my symptoms and what do you know? The next day my twitching had spread all over my body and my twitches were quite intense I couldn't see my GP because the next day i was leaving for vacation for two weeks. The twitching continued but i believed it was connected to vitamin deficiencies, i started taking magnesium supplements and they seemed to help quite a bit. I strongly believe my twitches are anxiety connected as they get worse when i get worked up. I do have some pain in my left forearm as well as my ring and pinky finger dont seem to want to work as well. I know that once i get the anxiety under control all will be sane but it still lingers in the back of my head that i could have something seriously wrong with me even though the probability of having als in your life is .0002 or something insane like that and myself having it at my age (18) is even more unlikely. I have a better chance of winning the lottery twice in a row, but it still bugs the hell out of me. I've never been diagnosed with GAD although its absolutely certain I have it since have the genetic predisposition for it aswell. Is there any advice any of you have for how you overcame or coped with your anxiety? Should i legitimately be worried about a disease as serious as ALS? Thanks in advance.

[Xerosnake90]

You fear unknowns. The idea of ALS is particularly scary because of what it represents. Likewise with any life threatening illness. Symptoms manifest through fear and you try to explain them in the same sense. Maybe it's ALS, maybe it's this or that. The intriguing question is this. If you didn't know about ALS, or lived back in the day when such information wasn't readily available. Would you fear the symptoms the way you do? What would you be afraid of it being if you had never heard of ANY such diseases.

In the end, the best way to avoid such fears is to see a doctor and get checked up for it. You don't need a diagnosis to considered anxious. You've already figured that out on your own. You don't need to keep wondering if something is wrong with you. Distract yourself enough so that these symptoms and thoughts don't have time to thrive. Anxiety comes off in layers and it's a process. It's a certain one however. Check out the thread in my sig, I spent a lot of time on it. Hopefully you'll find some answers and encouraging words there. Take it easy, and don't fuel your fears with thoughts of what if?

[Lilac]

Hi Tyler,

Where do I begin. If you read my threads, you'll see you're not the only one with this particular anxiety. I have been living in an ALS hell for almost four months. This text is LONG, but before you let this anxiety take over your mind, please read my story. I know how awful the fear of this disease can be.

In May I ran a relay race, and I overdid it. During the race I felt like I was about to faint and my legs hurt. When I finished, I could barely breathe. In the days after I experienced pins and needles as well as a tingling sensation in my arms and face. Long story short, I became anxious about them and went to the doctor several times. My heart and lungs were fine, and he said it was over-exertion. I just had to relax and let my body heal itself. I have struggled with an eating disorder (normal weight) for a few years, as well as iron and vitamin deficiencies and I don't exercise regularly. So, my body was probably not fit to run such a race to begin with, although I ran the shortest leg of the race. I ran faster than I've ever done before.

I also experienced muscle twitches (fasciculations) after the race. I have had them before, everyone has. Sometimes more often, due to my deficiencies. But my vitamin and mineral levels prior to the race were actually quite fine, despite my eating disorder. The twitches could not be explained by deficiencies this time.

So I started focusing on them, looking at them. All day long. Went to the doctor again, and the emergency room. That was when the anxiety really started. They said the twitches was caused by the race and over-exertion and my muscles and nerves were just tired and "irritated". It would just become worse if I kept focusing on them. I had to stop worrying because that would cause muscle tension and even worse twitching.
But I couldn't get them off my mind. They were so annoying and horrifying to look at. They were located to my calves and feet at that point, and sometimes around my knees.

I have known about ALS for some years, so I started making that connection. I have spent my ENTIRE summer reading and watching videos about ALS. I have spent all day looking at myself in the mirror and measure my body with a measuring tape. I was looking for asymmetry and muscle atrophy (wasting). Naturally, I found out that my non dominant left hand and arm is smaller than my right. This is natural to most people, as the dominant hand IS a little bigger and stronger than the other. And I use my right hand to everything. However, I convinced myself this was ALS muscle wasting. I found several "dents" in my body, which are actually just muscle definitions, and also thought they were wasting. I took several hundred pictures of myself every day to compare with pictures from the month before, etc. All I could think about was ALS, and I could see it everywhere. I was convinced I had it. I even dreamed about it every night for several months. I started feeling weak, and became scared of standing up, walking or lifting. I feared my body would fail. Yet, I took long walks and lifted weights EVERY DAY to prove my anxiety wrong.

My eating disorder had created a twisted body image, and to me I looked like a whale. All I could ever see was fat, fat, fat. I used to like my left arm better exactly because it IS a little thinner than my right.
With the ALS anxiety, however, my brain shifted focus. I went from seeing a huge whale, to seeing a fragile and atrophied young woman (I'm 25) with ALS. My left arm was now too thin - it was wasting away. My entire body was too thin. This is a perfect example of the power of your brain, because my weight and measurements were the exact same as before. Only my body image had changed.

The ALS anxiety took over my life, and the twitching became even worse. I stopped caring about my Master thesis, because I was sure I would be dead within a few years anyway. Finishing my degree would just be a waste of time since I would have no use for it. I stopped planning my future and looking forward to travelling etc. I seriously thought about leaving my boyfriend, because I had no future with him. I had ALS. I wanted to let go of my friends and family, and quit my job. I would not live to see 30, why should I keep them in my life? I couldn't sleep, and I considered ending my own life. Ironically, perhaps, but I would rather die on my own terms. I could never accept living with a disease that would slowly take away my ability to move my limbs, speak, eat or breathe. I had anxiety attacks so bad I ran (yes I ran, an ALS patient can't do that) out of my apartment, down the stairs and out in the street, trying to physically escape the thoughts.

I went to a neurologist and did a general clinical examination. I then did an EMG/NCV to prove my own fears. It ruled out ALS. There was nothing to find, not even twitching! I had twitching all the time, especially in my legs. How could this be? There was NO neurological and neuromuscular diseases that caused my twitching, and the neurologist said they would disappear if I got enough sleep and stopped putting more pressure and tension to my muscles and nerves.

I still couldn't calm down. And the twitching didn't go away. I wanted them to go away. I went to my GP again, and told him everything that I have written here.

I was diagnosed with a severe health anxiety (I have GAD as well), and was prescribed medications (Sobril, a Norwegian brand of benzodiazepines) for it. I have been seeing a therapist since December 2013 for my ED, perfectionism and GAD, and now we had to tackle the ALS anxiety as well. I continued being scared. My GP said that even if the twitches will not go away for another TWO YEARS, I just had to ignore them!

I have had twitches more or less constantly (but not exactly 24/7) in my legs and feet. With the anxiety, the twitching spread. I have had them in every skeletal muscle that is: calves, feet, thighs, butt, abdomen and stomach, back, arms, hands, throat, neck, cheek and jaw, eyelid, eyebrow, forehead, etc. They kind of "jump" from one body part to another, and never occur in my entire body at once.

Something happened two weeks ago. I started taking more vitamins, and also magnesium, potassium, calcium and chromium (?). I don't know if they actually had an effect, or if it was just placebo, but my body became a bit more relaxed. The twitching decreased! My insomnia got better, because I stopped going to bed fearing I wouldn't fall asleep. And along with a good night sleep comes an even more relaxed body and mind. The twitching decreased even more, and I entered a more peaceful state of mind. I started writing on my thesis again, seeing friends and family, and got a new outlook on life.

Now the twitching occurs every once in a while. I have accepted now that my body, and especially my nervous system, needs time to heal and recover after months of severe tension, stress and insomnia, and that is probably why the twitching has not disappeared completely. And they do become worse when I am stressed, have been taking long walks, etc. But they disappear quickly.

I was living in my own bubble; all I could think about was ALS. I could hear people speak to me, but I didn't listen to their words. I was just in an ALS world. I started getting paranoid, and with the "ALS Ice Bucket Challenge" feared that the disease was following me. I could see it and feel it everywhere, like it was a common cold. Keep in mind that ALS is a RARE, RARE disease! You feel weak, but if you can still use your body you are NOT ALS weak. It's a difference between perceived weakness and clinical weakness.

Take lessons from someone who's had twitching everywhere for four months, and a severe ALS anxiety. You say your leg started to twitch after your fathers episode, and it became worse when you looked it up online. Stay away from the internet! Go see a doctor, and it will turn out that your twitching is caused and maintained by your anxiety

Sorry for the extreme long post! I just don't want anyone else going down the same road.

[Tyler Patterson]

Wow thank you both a ton. I'm scheduled an appointment with my gp tomorrow to see if there isn't something i can take to help with the anxiety. Thanks a ton!

[Lilac]

You are most welcome, Tyler. Do you see a therapist? If not, you definitely should consider it as medications do not solve anxiety, and benzodiazepines especially are extremely addictive.

I wish you all the best!

[Tyler Patterson]

I do not currently but i have considered it. I'm lucky enough to have an aunt that im close to that is a pharmacist that can guide me through the medication and how they can affect me.

[TravisS]

Thanks for that story Lilac. Sounds like the exact story I am currently going through. I cant get it off my mind. I wake up feeling like I never went to sleep.My leg muscles are hurting all day. I sure hope I get over this and have the same outcome but I know until I see a nuero that theres no way Im gonna convince myself otherwise. I havent eaten hardly in 2 weeks, Im down about 14 lbs. I just wish it would all go away, Ive never experienced anything like this. I just keep prayin.

[Tyler Patterson]

Thanks for that story Lilac. Sounds like the exact story I am currently going through. I cant get it off my mind. I wake up feeling like I never went to sleep.My leg muscles are hurting all day. I sure hope I get over this and have the same outcome but I know until I see a nuero that theres no way Im gonna convince myself otherwise. I havent eaten hardly in 2 weeks, Im down about 14 lbs. I just wish it would all go away, Ive never experienced anything like this. I just keep prayin.

I went down that road as well with the not eating and trust me when I say it only gets worse when you don't. Force yourself through it, I've learned so much about als in the past month because I came obsessive about it and I'll tell you this, ALS doesn't present as heaviness or fatigue. Generally you just either can't pick something up with a hand or you have a foot drop and fall on a regular basis. I went through the same thing with my hand(thinking I wasn't moving it as well) and I can tell you that you do not want that. Realize that sometimes your body is just tired, your anxiety is preventing you from sleeping well at night. I know because I did the same thing, and let me tell you this. As long as you legs work you're fine go to walmart or publix and get some zzzquil take two tablets about 30- an hour before you go to bed.(only if you don't have school or work the next day because you'll sleep till your hearts desire) and you'll feel so much better.

[TravisS]

Thanks Tyler. I have been out in our warehouse at work all morning lifting and stacking heavy totes, up and down stairs, in and out of a trailer and I wasn't thinking about it and I felt fine. I came up and sat down for lunch and had a few twitches and it just keeps me thinking about it. Last night I did pretty well, thought I got some pretty good sleep but still woke up with almost a numbness in my legs. I am going to the doc today to get some blood tests, I am a terrible eater and I hope its just vitamins or something throwing me off a bit. Thanks ALL.

[Lilac]

Thanks Tyler. I have been out in our warehouse at work all morning lifting and stacking heavy totes, up and down stairs, in and out of a trailer and I wasn't thinking about it and I felt fine. I came up and sat down for lunch and had a few twitches and it just keeps me thinking about it. Last night I did pretty well, thought I got some pretty good sleep but still woke up with almost a numbness in my legs. I am going to the doc today to get some blood tests, I am a terrible eater and I hope its just vitamins or something throwing me off a bit. Thanks ALL.

Like said, exercise and heavy lifting cause twitching, especially if you are prone to having them.

Also (don't really know if you fear ALS in particular, Travis, but I'll say this to you as well): Pain, tingling, numbness sensations and pins and needles all practically rule out ALS. My neurologist told me this. ALS patients might experience pain in their joints, because of lack of muscle strength (if you feel pain in your joints now, DON'T be concerned. This is also normal with anxiety and all healthy people have pain in their joints from time to time. Remember that with ALS, any pain MIGHT occur when you are already clinically weak). However, they seldom have muscle pain. Why? Because their muscles are "dying", and they get this feeling of numbness in their muscles (not in the skin, which is a common sensation with a limb "falling asleep" for instance).

And why do sensations like tingling, skin numbness, pins and needles, etc. rule out ALS? Because ALS only attacks the nerves responsible for supplying skeletal muscles (the voluntary muscles) with motor neurons, and these neurons die. Voluntary muscles are any muscle you "choose" to use. And believe it or not, your tongue is a part of this group, although it seems quite hard to control the tongue.

However, ALS does not affect the part of the nervous system responsible for sensation in the skin, or the nerves supplying motor neurons to the "involuntary" muscle groups responsible for the activities that occur when the body is at rest, such as sexual arousal, urination, digestion, defecation, etc. (the parasympatetic nervous system).

Anxiety, on the other hand, affects your entire nervous system. If you are extremely tensed and constantly in a "fight or flight" mode, your nerves get kind of "squeezed" and irritated by the muscles under pressure, and you will experience symptoms from every part of the nervous system. That is why you might feel muscle pain, twitching, tingling sensations, and the feeling of having an insect crawling on your body. Symptoms of pressure to the parasympathetic nervous system with anxiety might include a more frequent urge to urinate, constipation, etc.

I'm not a doctor, so I can't be one hundred percent sure I have understood this correctly. But my neurologist told me that ALS does NOT cause muscle pain or a variety of sensory symptoms, like tingling, skin numbness, pins and needles, etc. If you have experienced this along with the twitches, you can almost be completely sure this is caused by anxiety and not ALS, as anxiety affects the entire nervous system and muscles. Your body is tired, you know! But it's a good thing you're both seeing a doctor soon ANYWAY, as only a doctor can give you the correct diagnose. Perhaps you will find some peace then. If you are not clinically weak and can still use your body, you do not have ALS or any other motor neuron disease.