Page 2 of 6 FirstFirst 1234 ... LastLast
Results 11 to 20 of 56
  1. #11
    Join Date
    Dec 2016
    Posts
    167

    Re: How did you get over the ALS fear?

    Thanks everyone. I think it will take time. That feels overwhelming. A month into this and I am no better mentally, in fact worse maybe. Really feeling depressed over this all.

    I am seeing a neurologist, therapist, and psychiatrist so I know I'm doing the right things.

    I just can't "shake it". And the fact that my hand and arm symptoms are no better continues the anxiety.

  2. #12

    Re: How did you get over the ALS fear?

    Hey, just thought id share my story as reading your stories made me feel a lot better, and im sure hundreds if not thousands of people with the ALS fear like ourselves will find their way to this forum, reading every post obsessively aboyt ALS fears and they will stumble upon this, and as reading other people stories made me feel a lot better thought id share mine... Im a 19 year old male, fit, very muscular, and in excellent health, approximately 5 months ago I started waking up at night unexplainedly and having very vivid dreams along with headaches which made me fear of a brain tumor, went to an expert neurologist and was reassured and that put my fears to rest, however that month was full of stress and panic attacks and anxiety, after beating the fear of brain cancer, and after the stressful period I noticed muscle twitching but just a twitch or two a day, nothing serious about 4 months ago, I didnt think anything of it but just to make sure I googled it.... worst mistake ever, as soon as I saw twitching could be related to ALS my twitches multiplied by the thousands, and started happening in all my body, I was terrified, at least two months went by with obssesive self testing, standing on one foot, walking on heels toes, finger tapping, testing my knee jerk reflexes, babinskis sign, hoffman sign, going to the gym daily and lifting incredible amounts of weights, more than Id had lifted in all my life, and the anxiety kept getting worse, the anxiety was so strong it made me feel physical symptoms,my mind would be fixed all day on als and I was so distracted by it I would start dropping things, and I immediately attributed it to als, one day my calves got incredibly sore after lifting 800 pounds on the leg press, and my irrational mind thought the soreness was due to ALS, needless to say the soreness went away after 2 days like any musclr after a hard workout... 2 months ago while walking a very steep hill and talking to a friend I felt slightly out of breath, and convined with my sleep issues I immediately thought "respiratory onset als"... another stupid rationalization being that at 19 years old with no als family history and having respiratory onset the chances would be 1 in 10 billion, but even so I went more obsessive testing, running 2 miles in 13:30 minutes to prove I was in excellent shape, forcing myself to sleep flat on my back to prove it wasnt due to als, etc... at this point the anxiety was so bad I could barely function, my life was falling apart and the thought was constant, I tried to hide it from my friends and family and girlfriend but I was so quiet when I was with them thinking about ALS im sure they knew something was up, at this point I was so scared I started drinking 24/7, I would wake up and drink alcohol all day long, my health anxiety was so bad even after several hours and at least 2 litres daily of vodka, in my most intoxicated state all that was on my mind was ALS, even testing my strength and reflexes while drunk, I also cheated on my girlfriend several times because I thought "why bother being faithful to her??? Im only going to live one year or two at most"... I was falling apart from a stupid irrational fear and destroying my life, of course during this period the twitching continued and other symptoms which I thought were als but are unrelated and were all somatic, I also spend several thousands of dollars on alcohol, food, a car, and other trivial things I didnt need because I thought, why bother with saving and investing my money, might as well spend it while I can, then 1 month ago I thought and still think I was slurring my speech, words feel like they dont sound right in my head but everybody tells me I sound fine and nobody had noticed, so I finally said enough is enough... If I keep going on like this im going to destroy my life... I went to a neurologist specialist in ALS, she examined my reflexes on all limbs and strength and told me she was a specialist in detecting early cases and she was 100% sure I didnt have als, that if she had the slightest doubt she would had sent me to have an EMG done but she was sure without a question and I could go on and live my life, she suggested to start phsycological therapy and anxiety medication though... I felt relieved for a few days after the appointment and the twitching disappeared, but after a few days I saw a dent on my left hand and stupid me thinking it was atrophy when its been like that all my life and the twitching started again, at this point I havent beaten it yet, im still going with another expert for a second opinion in 2 weeks and if he tells me the same ill start physcological therapy, however I just hope my story will help other people realize its an irrational fear which can destroy lifes, ive read stories where this particular fear of ALS destroys families, relationships, and causes losses of jobs and you can see thousands of stories like mine on several forums, dont let an irrational fear beat you, if you are truly worried go see an specialist on ALS, and if after he reassures you you are still worried, wait a couple of months to see that you will not lose any strength and that you are fine, but in the meantime live life to the fullest and dont let it destroy you, I hope everybody suffering with this particular ALS fear (which is probably much more common than the diseade itself) can get some relief from this stories and see that they are not alone, a lot of people like myself have gone through the same process and dont let it suck you into the rabbit hole... sorry for my bad english, not native language

  3. #13
    Join Date
    May 2016
    Posts
    417

    Re: How did you get over the ALS fear?

    Like I've said before the Brain Tumour to ALS seems a well trodden path.

    It's certainly the one I've followed.

    Stands to reason really as external Anxiety and Stress cause headaches, get the all clear on the headaches and then the increased Anxieties related to the headaches cause twitching and so the cycle continues.

    Only time seems to really heal the ALS fear as without deterioration, you don't have it.

  4. #14
    Join Date
    Dec 2016
    Posts
    167

    Re: How did you get over the ALS fear?

    Quote Originally Posted by Colicab85 View Post
    Like I've said before the Brain Tumour to ALS seems a well trodden path.

    It's certainly the one I've followed.

    Stands to reason really as external Anxiety and Stress cause headaches, get the all clear on the headaches and then the increased Anxieties related to the headaches cause twitching and so the cycle continues.

    Only time seems to really heal the ALS fear as without deterioration, you don't have it.
    My path was actually from MS to ALS. ;-)

    I've been wondering if on some level I am holding onto the fear because if I continue to be fearful that will somehow lessen my chances of it? Like, it would just be too ironic?? Conversely, if I logically tell myself that I'm being silly and of course I don't have ALS (and believe it); it will just sneak up on me and I won't be "prepared" (like you can ever be prepared.)

    Not sure if that makes any sense...

  5. #15
    Join Date
    Dec 2016
    Posts
    167

    Re: How did you get over the ALS fear?

    Thanks everyone for the replies.

    I had been feeling a bit better after the last week. Able to keep myself busy, thinking the zoloft has begun to kick in, actually had a few enjoyable moments over the past week. Still thought about ALS at least once a day, but was able to move past it and logically think I probably don't have it. (Since this began in mid-November, I am seeing my doc, neurologist, therapist and psychiatrist. Have started zoloft, klonopin, yoga, read claire weekes book, use relaxation techniques. So I have been proactive in trying to help myself through this.)

    Unfortunately I have taken a few steps back and it feels awful. My original symptoms for the past month have been loss of finger dexterity, hand cramps, arm fatigue. All in the left arm/hand. They have remained the same for the past month. No better, no worse, and pretty mild overall.

    Over the last couple days I have noticed fasciculations in my upper left arm. I have never noticed or had these before. The first time it happened I was able to logically dispel it...I have been helping my partner fix up his house and been using my arms more, so I attributed it to that. The second time it happened today in the same location it triggered my anxiety.

    I have done my fair share of reading about ALS on these forums and information websites. I have tried not to search online over the past month, but did initially. I think what keeps me frightened is that people who have ALS have such variable initial symptoms.

    Some say ALS is not subtle, but even on the ALSA website it says early symptoms are often subtle and often unnoticed by patients. Sometimes when a patient notices them and goes to the doc the doc is initially unconcerned and the patient ends up back at the doc months later with progression. Some say fascics are not an early symptom, but I have seen it listed as an early symptom and even read of PALS where it was their first symptom, along with fatigue but no clinical weakness. Some say it is pain free disease, but I have read that since motor nerves are so close to sensory nerves often they cause sympathetic pain. When reading PALS stories of their initial symptoms they are all over the place. Some had numbness and pain in the limb, some had fasciculations, some had fatigue... etc. Often those of us with the ALS fear are told that these things are not ALS. The differing information (often from reputable sources) makes it easier to remain fearful of this disease.

    Anyways, I guess I still have a long way to go. I am really trying but this bugger is really doing a number on me and truly has a grip on me. I'm not looking for reassurance per say but know there are are a few of you that can sympathize and lend a thoughtful word or two regarding this particular struggle. If so it would be much appreciated.

  6. #16
    Join Date
    Aug 2013
    Posts
    20,793

    Re: How did you get over the ALS fear?

    That's a very positive post and good for you that you're taking positive steps in treating the real source of the problem. Keep at it, you'll get there and don't be discouraged by a step back now and again. It happens to everyone, anxiety or not. Remember, one foot in front of the other, one day at a a time

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  7. #17
    Join Date
    Dec 2016
    Posts
    50

    Re: How did you get over the ALS fear?

    I had a dream last night that I was developing ALS symptoms. In the dream my left hand was twitching like crazy, however I am going through the worst anxiety period for ten years right now.
    What sometimes helps me with ALS (even though I sometimes worry about it), is checking the odds of being struck by the disease.
    For me, a 39 yr male, with "throat symptoms" I think the odds are somewhere around 2 in 100000, if not even lower. Thats the same as 1 in 50000.
    Think of it like this, you have to pick a number between 1 and 50000, and you only get one chance.

    I think the thing with ALS is that it is such a terrifying disease that we don't feel rational fear regarding it.

  8. #18
    Join Date
    May 2016
    Posts
    417

    Re: How did you get over the ALS fear?

    One thing I will say is that you have clearly been spending a long time loitering on the ALS forum.

    I'm willing to bet you've never posted but please STAY AWAY. Nothing good will come from hanging around there.

  9. #19

    Re: How did you get over the ALS fear?

    90% of ALS cases start with drop foot, slurred speech or profound hand weakenss, the other 10% are respiratory onset, and in some rare cases cramps and numbness or tingling can be the presenting symptoms, its extremely rare for twitching to be an initial symptoms, ask any MND specialist and they will likely answer that in their whole career they have never seen fascis as initial symptom, thats because twitching in ALS means the motor neurons controlling that muscle are already dead, even if it were an initial symptom it would quickly be followed by clinical weakness, I have read only one account of a man who had respiratory onset and had 1 year of twitching bodywide before diagnosis but again thats almost an impossible an extremely improbable case... the most likely cause for your twitching is your anxiety over als... keep us posted
    Last edited by Iker20; 01-01-17 at 18:21.

  10. #20
    Join Date
    Aug 2013
    Posts
    20,793

    Re: How did you get over the ALS fear?

    Quote Originally Posted by Colicab85 View Post
    One thing I will say is that you have clearly been spending a long time loitering on the ALS forum.

    I'm willing to bet you've never posted but please STAY AWAY. Nothing good will come from hanging around there.
    Agreed... and under no circumstances should you joining or post let alone reading. It's disrespectful to those that are actually suffering. I came to this site in 2013 after following a few posters that joined the H&N cancer forums seeking reassurance. I followed them here to give them a piece of my mind and ended up sticking around to try and help. So again, you don't have ALS IMO, so please respect those that are actually suffering.

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

Page 2 of 6 FirstFirst 1234 ... LastLast

Thread Information

Users Browsing this Thread

There are currently 2 users browsing this thread. (1 members and 1 guests)

  1. WorryWart12

Similar Threads

  1. Replies: 10
    Last Post: 19-04-16, 23:30
  2. Replies: 4
    Last Post: 18-11-15, 23:50
  3. persistent fear of death ? fear of having a short life ?
    By ChrisK in forum General Anxiety / Generalised anxiety disorder (GAD)
    Replies: 4
    Last Post: 11-11-14, 15:58
  4. Fear I reinforced my blurting something offensive fear with this behavior :(
    By Ditapage in forum OCD (Obsessive Compulsive Disorder)
    Replies: 3
    Last Post: 22-12-12, 11:14
  5. Replies: 16
    Last Post: 11-11-10, 22:38

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •