MamaBear2

New to this.... ALS Fears

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I really don’t think I was stressed or anxious about anything around the time they started. But when I googled, that’s when it all went downhill.  It’s literally the last thing I think about before falling asleep, I have dreams about it, and it’s my first thought in the morning! I think about it almost constantly, so that doesn’t help at ALL!! My emg is in about 10 days but I was told she didn’t have another opening to go over results with me until the second week in May!! It’s a different neuro in the practice doing the test. He’s the only one who performs them and then I guess he has to get the results to my doctor and such. Still so much waiting!

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I started noticing some odd areas in my hands a few weeks ago but I haven’t been to the neuro since then to ask and make sure it’s not atrophy.  It’s the same on both hands, so that gives me some peace.  I also didn’t have hand weakness on my exam, and I’m guessing if I had atrophy, I’d have weakness on an exam. 

Also, I’ve heard that ALS only presents on one side, not bilateral.  However, doesn’t it eventually move to both sides? I wonder how long it takes to present to both sides of your body? Does it go from your foot, to your other foot? Or is the pattern pretty random? 

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I know there have been a ton of replies already but I’ll jump in.

I’ve had literally every ALS symptom you can have. Started with muscle twitching in September 2018. Now I twitch all over (even in some uhhh... interesting areas to put it appropriately). I have muscle cramps everywhere. Brisk reflexes (to the point I bang my knee with my phone to test them). My arms feel weak. My legs feel weak and shake when I stand. Constantly feel like I have trouble swallowing. Feel like my voice is changing. I feel like my legs have lost muscle and that I have atrophy in my hands. 

I’ve been to probably 8 different doctors, including my neurologist 4 times. Finally the neurologist I think got tired of me coming in and scheduled an emg/ncs. That was in February. My EMG and ncs is officially 10 days away and I can’t wait for April 24th to get here. I do have to wait until May 10th (my birthday... yay me) to get the results but you better believe I’m asking the doctor who does my EMG if anything they saw looks like als. Don’t care how stupid I look. I’m about a millimeter away from losing my job with this. I’ve been worthless and so unproductive. 

8 doctors have told me that despite all my symptoms they don’t think I have als. Neurologist said she’d be blown away if I did end up having it after the EMG. 

Id suggest getting the EMG to put your worries to rest. Even if you move on to another illness, I think this health anxiety spell has been the worst for me. All my other fears (cancer, MS, etc) there was at least a chance to beat it and it not be fatal. With als.... no chance. Horrible death. No treatment. Praying my EMG comes back normal so I can actually makes plans for the future again. 

If you can climb out of this hell hole now, do it! ALS is the worst thing to fixate on having and you’ll worry so much you’ll give yourself all the symptoms. 

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27 minutes ago, plac8170 said:

I know there have been a ton of replies already but I’ll jump in.

I’ve had literally every ALS symptom you can have. Started with muscle twitching in September 2018. Now I twitch all over (even in some uhhh... interesting areas to put it appropriately). I have muscle cramps everywhere. Brisk reflexes (to the point I bang my knee with my phone to test them). My arms feel weak. My legs feel weak and shake when I stand. Constantly feel like I have trouble swallowing. Feel like my voice is changing. I feel like my legs have lost muscle and that I have atrophy in my hands. 

I’ve been to probably 8 different doctors, including my neurologist 4 times. Finally the neurologist I think got tired of me coming in and scheduled an emg/ncs. That was in February. My EMG and ncs is officially 10 days away and I can’t wait for April 24th to get here. I do have to wait until May 10th (my birthday... yay me) to get the results but you better believe I’m asking the doctor who does my EMG if anything they saw looks like als. Don’t care how stupid I look. I’m about a millimeter away from losing my job with this. I’ve been worthless and so unproductive. 

8 doctors have told me that despite all my symptoms they don’t think I have als. Neurologist said she’d be blown away if I did end up having it after the EMG. 

Id suggest getting the EMG to put your worries to rest. Even if you move on to another illness, I think this health anxiety spell has been the worst for me. All my other fears (cancer, MS, etc) there was at least a chance to beat it and it not be fatal. With als.... no chance. Horrible death. No treatment. Praying my EMG comes back normal so I can actually makes plans for the future again. 

If you can climb out of this hell hole now, do it! ALS is the worst thing to fixate on having and you’ll worry so much you’ll give yourself all the symptoms. 

I completely understand! The wait up to the EMG is hard but I know the wait for results will be even more hard.  I don’t know how I’ll take the news if my test comes back with something bad on it.  

Did you pass all the exams at the neuro’s office? Reflexes and strength? Did you show the dr where you thought you had atrophy? 

 

Its hard to plan for the future when you don’t know if you’re dealing with something fatal! 

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Did any of you ever have any atrophy? When I move my hands in a certain way, it looks like atrophy that I’ve never noticed on my hands before. However, it’s in both hands, same spots. I’ll attach some pics and feel free to give me your opinions! 

I cant figure out how to attach a photo? Says it’s too large! 

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Yes passed all the strength and reflex tests. Neurologist said my reflexes were a little brisk but chalked all my symptoms up to health anxiety. 

The waiting is the worst. As bad as it sounds all my other health fears could easily be ruled out at the ER. Brain tumor fear? Easy just a CT scan to rule it out. But unfortunately they don’t do emgs in th ER. And the wait for one is awful. 

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You've mentioned a lifelong history of anxiety - are you currently getting treated for that?  I understand that therapy isn't for everyone (or just too expensive if insurance doesn't cover it), but there are anxiety workbooks and the like that might be helpful to you!   

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42 minutes ago, plac8170 said:

Yes passed all the strength and reflex tests. Neurologist said my reflexes were a little brisk but chalked all my symptoms up to health anxiety. 

The waiting is the worst. As bad as it sounds all my other health fears could easily be ruled out at the ER. Brain tumor fear? Easy just a CT scan to rule it out. But unfortunately they don’t do emgs in th ER. And the wait for one is awful. 

When my chiro did my reflexes the first time, they were also brisk on both knees. But my pcp and the neuro both said they were fine that day. And yes, I’ve been told anxiety can cause that, too. That it’s more worrisome if it’s brisk in only one area, each time it’s tested! 

Wouldn't it be great if you could easily get those EMG’s done just like a CT scan?! 

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21 minutes ago, mollyfin said:

You've mentioned a lifelong history of anxiety - are you currently getting treated for that?  I understand that therapy isn't for everyone (or just too expensive if insurance doesn't cover it), but there are anxiety workbooks and the like that might be helpful to you!   

I haven’t ever been to a therapist but I think it’s probably time to start. If this turns out to be benign, and it’s really anxiety, then I’ll definitely start going to a therapist.  My insurance actually covers quite a few appointments, so I need to take advantage of that.  

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On 4/10/2019 at 9:38 AM, Holls said:

Hi MamaBear. well we are one in the same!! I'm 39, female and I have three children. I started with having a small panic attack during a grief counseling session then getting twitching in both calves later... googled twitching and nearly passed out in my living room.. ALS popped up.. I went to my Dr who also found tests to be normal including blood... but I had already had an appt with a neuro.. and this is where both you and I should have stopped. your Dr. should not have sent you to a neuro and while they did it to make you feel better it's completely unnecessary and they know it. if you passed strength test.. there is no als. twitching in ALS is after muscle death.. you would be failing and would have been a the doctor months and months ago... ALS twitches are entirely different then what you are experiencing. My neuro also said I passed his tests... but wanted to schedule an emg. well I left in a total panic. My husband was furious! He told me no more and not to go back. I carried this worry for two years!!!!!!!!! and it was mostly bec of the stupid neuro and what if's

So follow through and get your emg and when it comes back clean, which it will... drop this worry and never, ever look back.

hug. you don't have als.

Question...did you ever get the twitches whiles standing? There are times where the back of my thigh or my knee will twitch when I’m standing. That worries me way more than the resting ones. I’m not actually moving, but still standing vs just sitting around.  My twitches also stop upon movement.  I’ve read that a twitch when standing isn’t any more of a concern, but I’m not sure how accurate that is! 

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26 minutes ago, MamaBear2 said:

When my chiro did my reflexes the first time, they were also brisk on both knees. But my pcp and the neuro both said they were fine that day. And yes, I’ve been told anxiety can cause that, too. That it’s more worrisome if it’s brisk in only one area, each time it’s tested! 

Wouldn't it be great if you could easily get those EMG’s done just like a CT scan?! 

I’d trust your PCP and neurologist. Chiros are great don’t get me wrong, but a doctor especially a neurologist would be best equipped to tell if they were actually brisk. 

I’ve been told by my neurologist that als usually starts in one body part on one side of the body and progresses from there. She said if my symptoms were actually als I wouldn’t be functioning at all right now since I’m having symptoms everywhere. To a normal person that would be reassuring but to me I keep thinking “well maybe I’m the outlier with it in all four limbs”. 

Health anxiety sucks. So bad. I wish my EMG was tomorrow so I wouldn’t have to think about this anymore. 

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38 minutes ago, plac8170 said:

I’d trust your PCP and neurologist. Chiros are great don’t get me wrong, but a doctor especially a neurologist would be best equipped to tell if they were actually brisk. 

I’ve been told by my neurologist that als usually starts in one body part on one side of the body and progresses from there. She said if my symptoms were actually als I wouldn’t be functioning at all right now since I’m having symptoms everywhere. To a normal person that would be reassuring but to me I keep thinking “well maybe I’m the outlier with it in all four limbs”. 

Health anxiety sucks. So bad. I wish my EMG was tomorrow so I wouldn’t have to think about this anymore. 

Yes, it does! I have a love-hate relationship with the date of my EMG and then the results.  I will hate the date if I get a bad report but will love to get a good report and MOVE ON! 

Right now, my biggest worries are the dents I have noticed in my hands (same spot on both hands??!!) and the fact that I will twitch even when standing (but not actually moving). 

Mom ready to know what’s going on, but I fear the news, too! 

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1 minute ago, MamaBear2 said:

Yes, it does! I have a love-hate relationship with the date of my EMG and then the results.  I will hate the date if I get a bad report but will love to get a good report and MOVE ON! 

Right now, my biggest worries are the dents I have noticed in my hands (same spot on both hands??!!) and the fact that I will twitch even when standing (but not actually moving). 

Mom ready to know what’s going on, but I fear the news, too! 

I attached a picture of my dent in my right thumb. 

My legs twitch and shake while standing but not while walking. I think it’s just anxiety “jelly legs”. 

1362EE29-F672-4C83-866D-4FA27928FAFA.jpeg

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3 minutes ago, plac8170 said:

I attached a picture of my dent in my right thumb. 

My legs twitch and shake while standing but not while walking. I think it’s just anxiety “jelly legs”. 

1362EE29-F672-4C83-866D-4FA27928FAFA.jpeg

How did you get a picture to attach? Mine said too large!

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1 hour ago, plac8170 said:

I’d trust your PCP and neurologist. Chiros are great don’t get me wrong, but a doctor especially a neurologist would be best equipped to tell if they were actually brisk. 

I’ve been told by my neurologist that als usually starts in one body part on one side of the body and progresses from there. She said if my symptoms were actually als I wouldn’t be functioning at all right now since I’m having symptoms everywhere. To a normal person that would be reassuring but to me I keep thinking “well maybe I’m the outlier with it in all four limbs”. 

Health anxiety sucks. So bad. I wish my EMG was tomorrow so I wouldn’t have to think about this anymore. 

I'm not trying to be rude.. and believe me, I understand anxiety and the als rabbit hole but I believe you said 4 neuros already told you no als.. do you know how many people with als wish they were told that? Neuros can see a diagnosis coming with als.. people with als are failing by the time they reach out to a Dr... I hope that you are getting help for your anxiety first and not keep seeking out Drs for als. :(

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14 minutes ago, MamaBear2 said:

My dents are on the top of my hand. Under the thumb by my wrist and then in the middle of my hand, near my wrist. 

Dents are normal and we are NOT symmetrical. I was afraid that you were going to go down the rabbit hole. You really have to stop googling.. and keep your mind busy. I love this forum but sometimes talking with other anxious people about what you fear is going to make things worse. 

You do not have als. You already know that. Nothing you mention is at all als. Nothing! 

I had the jerks at night too. My Dr said anxiety anxiety anxiety!!!! 

Try to journal, take long walks to burn off the adrenaline and cortisol. Get stern with yourself when the doubt creeps in. Tell it no als, yes anxiety. 

Yes I had twitches standing, laying, driving. It didn't matter the only time they ever went away is when I said screw you twitches and stopped obsessing over them. Stop giving them so much power over you. Stop living like you have als when you have anxiety Only. 

Sorry but sometimes we need tough love. Hugs. Please move forward and away from this. 

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If you hold your thumb out the dent goes away? It’s not a dent just a wrinkle in the skin when you hold your thumb like that. If I hold my thumb like that I have several dents. 

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17 minutes ago, Holls said:

I'm not trying to be rude.. and believe me, I understand anxiety and the als rabbit hole but I believe you said 4 neuros already told you no als.. do you know how many people with als wish they were told that? Neuros can see a diagnosis coming with als.. people with als are failing by the time they reach out to a Dr... I hope that you are getting help for your anxiety first and not keep seeking out Drs for als. :(

It was one neurologist four times. 

I’m in therapy and take medication. Been dealing with this for 12 years. Nothing helps. 

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1 hour ago, Holls said:

Dents are normal and we are NOT symmetrical. I was afraid that you were going to go down the rabbit hole. You really have to stop googling.. and keep your mind busy. I love this forum but sometimes talking with other anxious people about what you fear is going to make things worse. 

You do not have als. You already know that. Nothing you mention is at all als. Nothing! 

I had the jerks at night too. My Dr said anxiety anxiety anxiety!!!! 

Try to journal, take long walks to burn off the adrenaline and cortisol. Get stern with yourself when the doubt creeps in. Tell it no als, yes anxiety. 

Yes I had twitches standing, laying, driving. It didn't matter the only time they ever went away is when I said screw you twitches and stopped obsessing over them. Stop giving them so much power over you. Stop living like you have als when you have anxiety Only. 

Sorry but sometimes we need tough love. Hugs. Please move forward and away from this. 

That makes me feel better! 

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4 hours ago, MamaBear2 said:

I haven’t ever been to a therapist but I think it’s probably time to start. If this turns out to be benign, and it’s really anxiety, then I’ll definitely start going to a therapist.  My insurance actually covers quite a few appointments, so I need to take advantage of that.  

That's a good plan.  Honestly 100% I do think this is going to turn out to be normal twitching - which I know sounds counterintuitive, but stress-induced twitches are pretty normal, and BFS is common.  I know they can be hard to ignore - for some reason I've started to get bad twitching in my feet at night when I'm trying to sleep; I'm not worried about it but it's so dang annoying! - but they're usually not serious.  

And I have a similar 'dent' in my thumb - never noticed until just now!  I definitely don't have ALS - just saw a neuro last year for a back MRI and the neuro exam came with it - so it clearly has at least one other cause!  

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Hi, Im new here.
 
I have huge health anxiety that is making my life hell! I have 2 young children who I can't enjoy because I fear I have ALS or MS. It all started after a very stressful time in my life and hasn't gone away. About 3 months of worry I have something dreadfull. I have intense head pressure and tingling all over my body and in the last 2 weeks have started getting muscle twitches in random places. Back of my neck. Legs. Arms. Back. I have a tight feeling in my chest constantly. Convinced I have ALS or MS. I have had loads of blood tests what have all been clear. Had CT scans and MRI or the brain. All clear. I'm waiting for a spinal MRI. The worst thing is them not finding so far a simple cause of my symptoms. I'm so scared daily its all I can think about. I have werid sensations all over daily. Seeing a nuro on Thursday. Please help 😞

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Hi. Miox. Welcome to AC. :).

It is strange, but it's typical of anxiety.

The worst thing is them not finding so far a simple cause of my symptoms. I'm so scared daily its all I can think about. I have werid sensations all over daily.

But there is very simple explanation to how you feel! ANXIETY! Now I am not minimising how you feel, no way! But all the symptoms you have and to which you have been declared OK are so typical of anxiety. It's so difficult for anyone who has no experience of anxiety to comprehend just what it can do to the body. I have seen every trick it can play and, believe me, new ones come up all the time. Health anxiety is one of the worst aspects of this problem because it's with you all the time. Thoughts about illness get stuck in your mind and you seem unable to let them go. ALS and MS are the 'fashion' now in anxiety sufferers. Why? Because we have read about them and although we are not doctors we believe what we read. Googling symptoms is not only stupid but dangerous in anxiety as is self diagnosis. You are so vulnerable to suggestion and, at the moment, your mind will fasten onto any negative feelings or emotions.

OK! So what to do? Two things can help a lot. Mild short term prescribed medication and good counselling. If the counselling is not available then read all the articles and posts on here. You will see you are far from alone. Now I'm going to suggest something you may find difficult, but let the thoughts and feelings come. YES, I do mean that. If you try to fight them off or struggle with them all you do is perpetuate them. You find yourself in a constant state of fear which adds to the awful symptoms you already have. In other words, do nothing. Allow it to happen. No, I have not flipped because I have seen total ACCEPTANCE work for so many. By accepting you take the sting out of 'IT'. Anxiety feeds on fear. It's its staple diet. Don't feed it. Starve it by letting it come without adding 'second fear'. That's all the 'What ifs' and the 'OMG's you add when you become fearful. 

You say you have gone through a stressful time, and no doubt that has 'triggered' the anxiety. It often happens that way. A divorce; a bereavement, an accident can all do it. It does depend on your temperament. Many can shrug things off, others, like us, take them in. It's a fact that  most of those who suffer with anxiety are sensitive people. They pick up so easily negative stuff from around them. Now take it easy and come back and let us know how it goes.  

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I have a number of dents in each of my thumbs and they have been there for many years and I am still OK as far as I know. None of our bodies are perfect and we all have some imperfections. Like some other posts have said, if you had ALS, you would know it. The people I knew of that had ALS had very noticeable symptoms and WORSENING symptoms that don't come and go. 

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There are only 5,000 cases of ALS per year in the USA and that works out to 2 in every 100,000 people. ALS occurs typically between 40 and 70, with the average age at diagnosis of 55. The risk increases as one ages. The disease is still considered pretty rare overall. There are 228,150 cases of lung cancer per year, 145,600 cases of colorectal cancer per year and 56,770 cases of pancreatic cancer per year. 

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