Page 1 of 2 12 LastLast
Results 1 to 10 of 15
  1. #1
    Join Date
    May 2020
    Posts
    21

    Fear of having bulbar ALS

    Hello everyone!

    I am new on this forum (and it's actually the first time I've ever joined an anxiety forum) but am in need of reassurance concerning what I'm going through.
    I have had anxiety for a few months now and have been fearing having ALS since November last year.
    My symptoms were muscle pain, twitching and perceived weakness and I therefore feared the limb-onset ALS.
    I saw a neurologist back in February who cleared me of ALS and refused to give me en EMG because I showed no clinical weakness and was able to put my fear to rest for a few weeks.
    Unfortunately, with all the crazy virus situation my country was put on lockdown in March and while staying home I developed new symptoms who made me believe once again I had ALS. I had again muscle pain, weakness and other weird neurological symptoms happening to my body but I also got sick (flu-like) and developed a sore throat which NEVER got away since (I've been having a sore throat since March)... Now I currently have other symptoms that make me believe I have bulbar ALS: I have a hoarse voice, especially after talking for a long time and issues swallowing (I feel like I can't swallow my saliva properly and always have too much in my mouth...)
    My doctor did an endoscopy and said it may be due to GERD so I've been on medication for that for five days now but I feel like the sensations and symptoms are even worse and I'm really in a bad place now, convinced I'm going to die from ALS so young (I'm only 21....)

    Has anyone here ever had similar issues because of another condition or anxiety?

  2. #2
    Join Date
    Aug 2013
    Posts
    20,893

    Re: Fear of having bulbar ALS

    Have you read THIS?

    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/

  3. #3
    Join Date
    May 2020
    Posts
    21

    Re: Fear of having bulbar ALS

    Yes I have, thanks for the link, but I don't get why it says hoarse voice isn't a symptom whereas I've been reading everywhere else that it actually is and that bulbar can begin that way...

  4. #4
    Join Date
    Aug 2013
    Posts
    20,893

    Re: Fear of having bulbar ALS

    Here's the deal. GERD can cause all the symptoms you're experiencing and anxiety exasperates those symptoms. You've been cleared of ALS by a medical professional who refused to give you an EMG as he was that confident in his examination. Add to that you're posting about this on an anxiety forum and that's pretty much the end of it.

    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/

  5. #5
    Join Date
    May 2020
    Posts
    21

    Re: Fear of having bulbar ALS

    Thanks, but he cleared me from the limb ALS as I didn't have any bulbar symptoms back then. But yeah I know deep down it's probably only anxiety making me feel crazy symptoms! Thanks for taking the time to answer

  6. #6
    Join Date
    Dec 2016
    Posts
    2,418

    Re: Fear of having bulbar ALS

    Listen to FMP, friend. What are you doing to treat your anxiety?
    __________________
    I'm still a work in progress.
    Currently working on: World Domination

  7. #7
    Join Date
    May 2020
    Posts
    21

    Re: Fear of having bulbar ALS

    I'm seeing a therapist and was on medication but I'm getting out of it (of the medication). Also started yoga, it helps quite a lot with the anxiety!

  8. #8
    Join Date
    Dec 2016
    Posts
    2,418

    Re: Fear of having bulbar ALS

    Good, keep seeing the therapist and doing the yoga. What's with the medication? Also, remember, there are other things you can add to your toolkit like meditation, mindfullness, journaling, talking groups, self-help books, etc. Keep working on it. You have a much better success rate with treating your anxiety than any possibility of you getting ALS.
    __________________
    I'm still a work in progress.
    Currently working on: World Domination

  9. #9
    Join Date
    May 2020
    Posts
    21

    My ALS worry story

    Hello everyone!
    I'm new on this forum, I already posted on this sub about bulbar ALS and I've gotten over this fear since I really don't have symptoms (except a kinda raspy voice but I'm now *kinda* reassured that's not it..) but I'm again worried about limb onset ALS and I figured I would tell my entire story of worry about ALS and maybe (hopefully) some of you will be able to relate and calm my worries!

    So I suffer from health anxiety which started last August when I discovered a lump under my jaw and immediately panicked and thought I had cancer... Since then I've felt like I can't trust my body and been fearing a lot of deadly diseases, but the most awful one and the worst fear I've had is ALS...

    It started in November when I started having arm pain in my left arm one day out of the blue. I didn't worry too much about it at first and almost forgot about it when I watched a documentary about ALS... (worst idea of my life!). In the documentary, one doctor said that it was a really difficult diagnosis to give people, especially when they were young (30 ish) and came for only for a shoulder pain. It struck me at this instant that my arm pain I had been having for less then a day may be due to ALS! From that moment I could't get it out of my head and since then I've been convinced I had it!

    The arm pain lasted a very very long time (like 2 months) and I went to the ER twice for it, where they told me both times it was nothing and especially not something neurological but I kept fearing ALS... I then began to experience other symptoms that were really scary: my hands would tremors, I felt weak, I had twitches in my hand muscle and in my fingers (the twitch would move the whole finger - really scary!), my arm would get really heavy and felt weird, etc...
    I also had recurring problems with my left ulnar nerve, where my pinky and ring fingers and the side of my hand would get numb/pins and needles and that convinced me it was ALS as well!

    I was convinced I had ALS and it was starting in my left arm.. I went to my doctor and told him about it, he said it was impossible I had it given my age (21) and ordered some blood work to see if something was wrong with my muscles but everything was fine..
    Since he saw that I was really worried and had been for months, he referred me to a neurologist to calm my fears. Neuro was very nice and understood I was worried. He did a complete physical neuro exam and concluded I was fine and had no weakness and refused to give me an EMG which I would have liked to have to appease my fears...
    Nevertheless, the arm pain went away and so did most of my symptoms and I kept telling myself I was fine and healthy and just had anxiety. I started to think less and less about ALS and was very happy about it!

    I saw the neuro in February but, unfortunately, mid-March, my country was put under lockdown due to the Coronavirus.
    It was a very stressful time, I had to deal with having my uni classes at home and was scared to have the Covid, was worried for my grandma getting it and dying, etc.. so I was under a lot of stress!
    This caused the symptoms to come back at one point (don't remember precisely when) and my worries about ALS came back as well... I was having left arm pain and a weird feeling in that arm once again, numb fingers, perceived weakness in my fingers, my arms felt really heavy, and a ton of other symptoms,...
    In March, I also got sick (don't know if it was Covid or just regular flu) and got a sore throat and raspy voice, which never left and got me worried I had bulbar ALS (which explains my previous post about that).
    I saw an ENT who told me it was wither GERD or post nasal drip causing that and since I don't have many any other symptoms such as difficulty to swallow, etc.. I've calmed myself about that.

    The issue is I still have a ton of neurological symptoms that won't go away and really scare me! The other day for example, I was out with some friends for the first time since lockdown (everything is starting to re-open) and suddenly both my arms got really really heavy and weak, I couldn't lift them! It lasted for around 15 minutes and I managed to stay calm since I didn't want to cause a scene in front of my friends and then it got away, but it was really scary!
    And I have a very weak feeling in my hands permanently, I don't really know how to explain it, but I feel like they're weak and can't do anything properly, it feels weird when I lift objects for example and I'm very worried it's ALS starting in my hands... When I make a fist or try to test my strength I feel as if I have no strength left and it's really scary.

    And concerning my anxiety, I've been on medication since January (Deanxit, once a day) but am trying to stop it, but since I'm so worried it's difficult to stop now... the medication helps my thoughts and my anxiety but hasn't done anything to help my symptoms, I still get them a lot! I also see a therapist which is really nice and gives me good advices, but she can't really help with my symptoms which is what worried me the most.. And I also do yoga once a day, when I do it I usually have no pain or weird stuff happening which is a good sign but I do get shaky muscles from certain positions (ex: my arms shake when I'm in downward dog) and this scares me a lot of course!

    Anyway, thanks for reading if you've managed till the end! and I hope some people have experienced similar stuff because of anxiety and that it will go away

    PS: I've read the "Why you don't have ALS" sticky but it hasn't really been helping my fears unfortunately...

  10. #10
    Join Date
    May 2020
    Posts
    21

    Re: Fear of having bulbar ALS

    Deanxit, once a day.
    Thanks

Page 1 of 2 12 LastLast

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. I fear it's bulbar onset ALS
    By william17327 in forum Symptoms
    Replies: 4
    Last Post: 15-10-17, 19:16
  2. Bulbar ALS fear
    By breezie in forum Health Anxiety
    Replies: 29
    Last Post: 19-08-17, 04:01
  3. I'm so happy I'm not alone (bulbar ALS fear)
    By vincy in forum Health Anxiety
    Replies: 0
    Last Post: 05-08-17, 08:23
  4. Bulbar als
    By LE in forum Health Anxiety
    Replies: 30
    Last Post: 24-03-17, 08:40
  5. Replies: 5
    Last Post: 06-05-15, 09:22

Posting Permissions

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