Constant fear of ALS

[Rosie206 4]

Hi to all.

I have been suffering with a fear of ALS or motor neurone disease as it’s also known by for over a year now. This fear has taken over my life and is something I think about every single day. My uncle had passed away from this awful disease as did my friends father so I suppose I’ve been made aware of how awful and aggressive this illness is. It all began after I suffered with a really bad chest infection. I felt really unwell for about a week and had some time off work. Work was stressful at the time and I had upcoming college exams. A long term relationship had just ended although I didn’t feel like I grieved this at the time. 
I had the strangest sensation in my right arm when I was trying to write and at that point immediately thought it was the onset of ALS symptoms and had my first panic attack. This was over a year ago. I have been to a neurologist who has examined me and given me the all clear. I have had nerve conduction studies. I have had a EMG. I have had a brain and neck MRI, all thankfully coming back clear. But I still cannot shake the fear of this illness. Some days are better than others where I will barely think about it. But some days the fear is crippling. I’m constantly testing my strength and trawling sites like this to hear about other people who have felt these symptoms and how they have overcome it. I am living in a state of fear. It is so debilitating and I cannot shake the fear I feel about this. I’m wondering if anybody else has similar worries and how they found it best to overcome them? I was initially put on anti anxiety medication but found them to be no help so came off these. I went to see a couple of counsellor a but found them to be no help. It’s like my mind is so stubborn and almost refuses to believe that I am anxious and doesn’t want to listen to a counsellor tell me what they think. I just want to try and live a normal life again without this awful weight on my shoulders. Anyone else feel similarly? And if so, what has helped you to cope? Many thanks in advance!

[Holls 1505]

Als is one of the worst anxiety health based worry you can have. It's truly a rabbit hole. Firstly people with ALS do not have sensations.. or feel anything is wrong. So Bec you felt this sensation in your arm points the total opposite way of als and the only reason your mind went there is Bec of your uncle and father's friend. You had an emg and have been examined. You were told no. So at this point it's no longer about Als it's about anxiety. I had the fear for two years and finally went to a therapist. At first I did resist Bec I thought she's not feeling what I am so what she tells me is wrong ..well that's wrong. She told me something that set me free. She said holls, these thoughts are just thoughts they aren't real. And I really believed my thoughts. My mind told me I had this disease. I told my mind no every time it lied to me. You have to let the thought come in and then say nope that's a lie and soon the thoughts stop. I would suggest a therapist. You can't google als. You have to stop or you will never get well. Walking, reading, biking.. cooking painting.. find something that keeps your mind busy and off Google. Clear the mind. 

You don't have als so please stop living like you do. You are wasting your time on this. Hugs. 

[Rosie206 4]

Thanks Holls for your kind words. Do you continue to go to a therapist? Do you also find that you still have bad days, maybe brought on my stress or even just thinking about the fear of that illness? For instance the other day there was an article in the newspaper about a sufferer of that awful disease and how his family raised money walking the length of the country (I’m in Ireland) and even reading that article just instilled fear in me again. I get so frustrated at myself as I know there are people out there who are actually facing this and have been diagnosed with this illness or other fatal illnesses and I think of how they are feeling while I am obsessing over it. And not obsessing because I want it, obsessing because I fear it so much. 
I will take your advice on board with exercise, cooking, reading. How long until you started to feel normal again? I wonder is this a battle that you have to train your mind against forever..

[Holls 1505]

Yes I still see my therapist once every two weeks but since the virus I have therapy with her over the phone. I didn't want my anxiety getting out of hand with worrying over the virus. So far so good. 

Yes ! I now have maybe 1 day out of three months if I stumble my mind goes right to als. I fell twice two weeks ago slipping on mud and all I thought was als. I did talk it over with my therapist and I got through it very fast. Maybe one days worth of worry. In the beginning of my "recovery" from this worry I had several set backs. Sometimes lasting weeks or days. When I have general anxiety about work I would find I would have tension in my legs and they felt weak Bec of it and that fueled my ALS worries. 

I absolutely never, ever read any health articles related to als. Sometimes, honestly this forum and helping others will trigger a little worry in me. But that's Bec it's once again on my mind. I want to help you Bec I know you are fine.. it took me months to come out of my first bout with this fear then I had a set back that lasted a few more months then when my therapist told me my thoughts weren't real it just all clicked that I was doing this to myself and my thoughts were completely irrational. I had to work at it every single day for awhile. I don't think it's a forever worry . I think it might flash in your mind here in there but it won't be the panic attack type of anxiety, Bec you grow to know that your mind was completely lying to you and that you weren't looking at the disease correctly. Now I can see that my weak legs weren't weak at all Bec I wasn't failing to do daily tasks and my twitches weren't anything else than anxiety driven. 

Just start now and you will get better. My biggest advice is setbacks are going to happen but they will get fewer and fewer. 

[Rosie206 4]

Thank you so much Holls. I really appreciate your help and advice and knowing you have went through the same sort of fear but have managed to battle on is very admirable. I hope I can one day be in a better position and have a proper hold over my anxiety. Thanks again and take care 

[Holls 1505]

15 hours ago, Rosie206 said:

Thank you so much Holls. I really appreciate your help and advice and knowing you have went through the same sort of fear but have managed to battle on is very admirable. I hope I can one day be in a better position and have a proper hold over my anxiety. Thanks again and take care 

You take care as well. You are okay and you are wanting to get better and that's already a huge step. Hugs. 

[Jennie0813 0]

@holls you seem so knowledgeable about this stuff.  So I’m curious what you think of this.  I started to experience About 3 weeks ago very mild pins and needles in my outer hand/palm.  Didn’t freak out too badly because I am working from home and workspace probably isn’t ergonomic.  That said, my actual office isn’t so great either and neither is my posture.  Then I swear I started to feel like my left arm (same arm as the pins) felt very cold but on the inside, not cold to the touch.  I called my pcp, she was thinking some sort of carpal tunnel but the cold thing threw her off. I’m set up for a neuro consult June 1, but presumably just a consult - no tests scheduled.

a couple of days ago I started to notice both of my arms felt really heavy/sluggish.  I don’t know how to explain this - just like really heavy around both shoulders.  Pins and needles basically gone now.  I googled. Bilateral arm weakness and the first hit was ALS.  I spiraled out of control last night, couldn’t eat, couldn’t sleep, crying hysterically.  My husband is 50, I’m 40, we had kids later in life - have 18m old twins.  My brain immediately went to I’m going to die of als, my husband will have no one, my kids will only know me as a shell of myself before I die.  
 

my hands and arms appear to work fine, but maybe it’s a fatigue feeling? I don’t know how to explain it.  The anxiety is killing me though.  I’ve been in bed all day and I can’t eat.  Never had an anxiety attack before and I don’t know why this hit me so badly but I can’t shake it. I don’t know what to do. 

[Holls 1505]

13 hours ago, Jennie0813 said:

@holls you seem so knowledgeable about this stuff.  So I’m curious what you think of this.  I started to experience About 3 weeks ago very mild pins and needles in my outer hand/palm.  Didn’t freak out too badly because I am working from home and workspace probably isn’t ergonomic.  That said, my actual office isn’t so great either and neither is my posture.  Then I swear I started to feel like my left arm (same arm as the pins) felt very cold but on the inside, not cold to the touch.  I called my pcp, she was thinking some sort of carpal tunnel but the cold thing threw her off. I’m set up for a neuro consult June 1, but presumably just a consult - no tests scheduled.

a couple of days ago I started to notice both of my arms felt really heavy/sluggish.  I don’t know how to explain this - just like really heavy around both shoulders.  Pins and needles basically gone now.  I googled. Bilateral arm weakness and the first hit was ALS.  I spiraled out of control last night, couldn’t eat, couldn’t sleep, crying hysterically.  My husband is 50, I’m 40, we had kids later in life - have 18m old twins.  My brain immediately went to I’m going to die of als, my husband will have no one, my kids will only know me as a shell of myself before I die.  
 

my hands and arms appear to work fine, but maybe it’s a fatigue feeling? I don’t know how to explain it.  The anxiety is killing me though.  I’ve been in bed all day and I can’t eat.  Never had an anxiety attack before and I don’t know why this hit me so badly but I can’t shake it. I don’t know what to do. 

I wanted to post here Bec I didn't see some of this .. pins and needles feeling points away from als. Away away... You also said your arms feel tired.. in als patients can't feel anything... They have no pins and needles feeling and they don't feel tired or weak.. they ARE weak, and that's called clinical weakness. You don't have als... Not even close.. you can absolutely put this fear away.. and fast too Bec you can go down a rabbit hole that is hell. Trust me. Hugs. 

[superscared 0]

I'm so sorry to hijack this thread but I'm having a mini panic attack right now obsessing about ALS. I feel I am exhibiting signs and symptoms. I am confused about the clinical weakness thing though. I think I have a really weak proximal bicep to the point I don't think the upper part works. Well it's extremely weak and sometimes my shoulder and forearm ache from compensating for the bicep weakness. I am scared that my bicep is just giving up and therefore this is clinical weakness right? I can still do tasks using the other muscles in my arm but lifting something heavyish to the side (requiring my upper biceps to engage) can be near impossible for me. Also I have googled (obviously torturing myself here) and some ALS stories do not say they were too weak to do anything just that they were losing strength so now I don't know what to think :((((