ALS fears all of a sudden-UGHHHH SOS

[Betty]

Hi everyone. I am starting to have fears that I haven't had in many, many years. AGAIN. I am frustrated with the thoughts and even more frustrated with the feelings. I know that this is my pattern, but why does this stupid pattern have so much control over me????

I have had a rough patch these last 3 months. It started with shingles, that seemed to trigger my anxiety and depression although I think the timing was rather coincidental when I really think about it. I had EXTREMELY dry eyes for 2 months, finally got that under control, although the problem is persisting. Then I started having progressively worse dry mouth. To the point that I am having a hard time swallowing and I have choked on my food a couple of times. I have had both dry eyes and mouth in the past, very intermittently and not to the point that it had any impact on my life or ability to function like it does now, and have thought for many years that I probably have Sjogren's Syndrome. Now I am convinced, but of course since I have a history of anxiety, and I am a women, my doc seems to want every single thing I feel to be anxiety related. So I have been frustrated trying to deal with these feelings for 3 months now. Some are getting worse while others are getting better and so of course this morning, still sitting here with no answers and getting more and more concerned that I will feel this way forever, ALS popped into my head.

WHY?!?!?! I hate that I go there, because I have been down this road before and I don't want to do it again. I am really having swallowing problems, plus in the last 2 weeks I have had a few episodes of my knee kinda giving out on me. And of course all of this is giving me major neck tension and that makes my arms hurt and feel weak...so ALS!I was fine just fighting to get a SS diagnosis, because I KNOW there is something really going on here, I am not afraid of it or catastrophizing, I just want a diagnosis so I can get proper treatment. But the ALS thing? That is pure health anxiety and I find for me, it's a slippery slope to complete loss of control when I start to think about the big one...ALS, Brain Tumors, Cancer. SO please, someone talk me off this ledge?

-B

 

[triceps]

Oh Betty, I'm so sorry. I wish I had some sort of solution or words of wisdom that would help your suffering. The only thing I'm confident of is the fact that you don't have ALS.

 

[Hal 9000]

ALS was always one of my two biggest health anxiety fears.
One website made me feel a lot better about that.

I never help people Google their symptoms away, attacking the anxiety is a much better approach.
I make an exception in this case since this site really helped me.
Let me know.

https://scarysymptoms.com/2012/02/muscle-twitching-help-foot-drop/

 

[shreders8]

I too am deathly scared of ALS. Had an EMG done in April which was NORMAL but still the anxiety persists. If you're really worried where it's effecting your life, go seek a neurologist for an EMG. You get the results that day and you can put ALS behind you. Good luck.

 

[Betty]

Thanks to you all. I didn't respond sooner because I was trying to avoid the fear and the thoughts. That said, I came back today because the thoughts are lingering. I am still struggling with many of the same health issues, except that I now have positive blood work and am waiting for a rheumatology consult. As for the ALS, the fears are still there. HAL9000 that link did actually make me feel a lot better. I keep telling myself that I am not being reasonable, but anxiety isn't reasonable is it?

 

[triceps]

Hi Betty, just want to give you another reassurance that you don't have ALS.

 

[Titus1229]

I have had severe health anxiety for over a year now, convinced of colon cancer, lung cancer, and bone cancer. All I had a symptom that led to more severe symptoms that led me to getting expensive tests that revealed there was nothing. The next day my symptoms would disappear. I am now convinced I have ALS, 3 months ago I started noticing my forearms feeling weak and tired, triggered me to think I have ALS and I have since developed weakness and twitching in my legs, more often specifically my left foot. I constantly assess myself and do things to test my strength. I can do most everything but have constant sensations in my feet. I have been to pcp 3 times and told I’m fine but referred to neuro to help my angst. Can’t get me in until January. I’m 35yrs old male with “great health” other than anxiety and depression. Need help it’s ruining my life before my eyes and I can’t do anything about it. Anyone that can relate or have advice please fire away.

 

[triceps]

I have had severe health anxiety for over a year now, convinced of colon cancer, lung cancer, and bone cancer. All I had a symptom that led to more severe symptoms that led me to getting expensive tests that revealed there was nothing. The next day my symptoms would disappear. I am now convinced I have ALS, 3 months ago I started noticing my forearms feeling weak and tired, triggered me to think I have ALS and I have since developed weakness and twitching in my legs, more often specifically my left foot. I constantly assess myself and do things to test my strength. I can do most everything but have constant sensations in my feet. I have been to pcp 3 times and told I’m fine but referred to neuro to help my angst. Can’t get me in until January. I’m 35yrs old male with “great health” other than anxiety and depression. Need help it’s ruining my life before my eyes and I can’t do anything about it. Anyone that can relate or have advice please fire away.

Hi Titus. There are times that my anxiety causes weakness in either my arms or my legs. One morning I couldn't walk without assistance. My wife took me to the doctor that day and they did some bloodwork, finding nothing wrong. I had feared I had MS but thankfully I'm able to believe my doctor's opinion and it subsided the next day. I have generalized anxiety that makes me worry about all kinds of irrational things. The fact that I'm able to accept the medical folks' findings separates me from those with health anxiety. I was just trying to show an example of how powerful the symptoms can be that anxiety can cause.

 

[Titus1229]

Hi Titus. There are times that my anxiety causes weakness in either my arms or my legs. One morning I couldn't walk without assistance. My wife took me to the doctor that day and they did some bloodwork, finding nothing wrong. I had feared I had MS but thankfully I'm able to believe my doctor's opinion and it subsided the next day. I have generalized anxiety that makes me worry about all kinds of irrational things. The fact that I'm able to accept the medical folks' findings separates me from those with health anxiety. I was just trying to show an example of how powerful the symptoms can be that anxiety can cause.

Thank you,
Unfortunately my symptoms persist until I have tests. At least I’m hoping that’s the case with these symptoms, when I was having the “colon cancer” symptoms they got worse until I had a colonoscopy that was clear. I’m in a vicious cycle. I obsess about every step I take and everything I pick up. It’s horrible. Affects my job and my family. Trying everything from meds to counseling, 2 month wait to get into psychiatrist.

 

[piscesgirl_]

ALS is also a big fear of mine too. I remember watching empire then luscious got diagnosed with ALS I didn't know what is was until I googled it and I should of never did. I hope you get through this.

 

[Betty]

I totally understand what you are going through. As much as I try, I can't seem to shake this one either. I too am doing strength tests and constantly googling, which I know is just a recipe for disaster, but I can't seem to find a way to let this thing go. I had a bunch of blood tests done yesterday, hopefully I get some relief with those results. Like many of us, I can't usually relax until I have had extensive testing, but even then sometimes it lingers. I just want you to know you are not alone, this is also affecting my day to day life and my job (as a nurse, go figure, you think I would know better but maybe I know too much).

 

[Titus1229]

ALS is also a big fear of mine too. I remember watching empire then luscious got diagnosed with ALS I didn't know what is was until I googled it and I should of never did. I hope you get through this.

I totally understand what you are going through. As much as I try, I can't seem to shake this one either. I too am doing strength tests and constantly googling, which I know is just a recipe for disaster, but I can't seem to find a way to let this thing go. I had a bunch of blood tests done yesterday, hopefully I get some relief with those results. Like many of us, I can't usually relax until I have had extensive testing, but even then sometimes it lingers. I just want you to know you are not alone, this is also affecting my day to day life and my job (as a nurse, go figure, you think I would know better but maybe I know too much).

I totally understand what you are going through. As much as I try, I can't seem to shake this one either. I too am doing strength tests and constantly googling, which I know is just a recipe for disaster, but I can't seem to find a way to let this thing go. I had a bunch of blood tests done yesterday, hopefully I get some relief with those results. Like many of us, I can't usually relax until I have had extensive testing, but even then sometimes it lingers. I just want you to know you are not alone, this is also affecting my day to day life and my job (as a nurse, go figure, you think I would know better but maybe I know too much).

i honestly can’t imagine working in the medical field and witnessing the things you fear and having an advanced knowledge of diseases. I don’t know what to do, help doesn’t come fast enough. I can’t just sit back and think ahh it’s all in my head, it’s real as can be to me. On meds that are not helping, waiting forever for neuro and psych appts.

 

[Steven]

Betty,

I think pretty much all of us health anxiety sufferers have thought about ALS at least once, so you’re not alone on that one. I totally get what your saying about not wanting to get caught back in the “pattern” of health anxiety. I can usually tell that I’m heading right back down that pattern with a new made up disease and even though I know I’m doing it I still can’t stop it. I think that has something to do with OCD. It’s like you know that the pattern is in your head but it’s so hard to stop.

 

[Titus1229]

I definitely have some OCD tied to my issues. Constantly testing and examining myself. Is there anything I can’t do today that I could do yesterday? Is my right arm smaller today? Can I still lift this much weight? It’s exhausting!

 

[Steven]

I definitely have some OCD tied to my issues. Constantly testing and examining myself. Is there anything I can’t do today that I could do yesterday? Is my right arm smaller today? Can I still lift this much weight? It’s exhausting!

Oh yeah same here.

 

[Titus1229]

My new thing is typing tests online, I obsessively do the same typing test over and over making sure I can still use my fingers correctly. Maddening!

 

[Betty]

I saw a neurologist today who doesn't think I have ALS but is sending me for an MRI and EMG (4 limbs for both) because of my symptoms. And like a true hypochondriac I am freaking out because I didn't mentioned slurred speech to him, which I feel that I have but my husband insists I don't, and the plan is not in place to EMG my tongue. So here I sit with a normal neuro exam, pins and needles in my hands, feet, face and mouth, and the fear of ALS persists even though the Neurologist said "ALS doesn't have tingling and numbness". But how could I not mention that I fear bulbar onset? Because I didn't want him to think I was a hypochondriac! UGGGGGH. The EMG is in February, so I have to wait 3.5 months...I am assuming that if it is ALS of bulbar onset that my symptoms will just get worse by then and any part of my body that is EMG'd will show something anyway. He also said that my facial and tongue numbness is caused by anxiety.....

 

[Steven]

That is great news that the doc doesn’t think it’s ALS! Seems like sometimes they just schedule you for additional tests just to cover their own asses in case they missed something. But it sounds like it’s not ALS so that’s great.

 

[triceps]

I saw a neurologist today who doesn't think I have ALS but is sending me for an MRI and EMG (4 limbs for both) because of my symptoms. And like a true hypochondriac I am freaking out because I didn't mentioned slurred speech to him, which I feel that I have but my husband insists I don't, and the plan is not in place to EMG my tongue. So here I sit with a normal neuro exam, pins and needles in my hands, feet, face and mouth, and the fear of ALS persists even though the Neurologist said "ALS doesn't have tingling and numbness". But how could I not mention that I fear bulbar onset? Because I didn't want him to think I was a hypochondriac! UGGGGGH. The EMG is in February, so I have to wait 3.5 months...I am assuming that if it is ALS of bulbar onset that my symptoms will just get worse by then and any part of my body that is EMG'd will show something anyway. He also said that my facial and tongue numbness is caused by anxiety.....

Has anyone with health anxiety tried writing 100 times, in this case, "I don't have ALS"? Just wondering if that much repetition of an idea just might sink in. I'm sorry if it's a stupid idea but health anxiety is so stubborn in its' convincing you that you've still got a disease that the medical field assures you that you don't have.

 

[Betty]

Has anyone with health anxiety tried writing 100 times, in this case, "I don't have ALS"? Just wondering if that much repetition of an idea just might sink in. I'm sorry if it's a stupid idea but health anxiety is so stubborn in its' convincing you that you've still got a disease that the medical field assures you that you don't have.

Seriously! I actually left there feeling good and it lasted for like, 5 minutes because I started doubting again. Did I tell him this? Why didn't I say that? Can he really do an good assessment of me if I left out the most important info? Like, a thousand thoughts and despite my best efforts, I still keep thinking it. It's gotten to the point that I am so convinced that I am almost just waiting for them to finally figure out what I think I already know....does that make sense? AND the fact that he asked me if I have anxiety. I can't help but feel that as soon as they hear anxiety, they stop feeling that your concerns are serious. And that freaks me out even more. But in the end the tests will give me the answers I need. I just wish I didn't have to wait so long for the EMG.