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emmegee
10-12-16, 00:31
Thanks in advance for your replies.

I am currently dealing with a HA ALS fear. In reading a bunch of other posts on the subject, I see a lot of responses like:

"I wasted a year of my life on fearing ALS"

i.e. it seems there are a lot of you that have "been there done that" when it comes to the dreaded ALS Health Anxiety. Many explain it was a very dark period of time before they got over it.

So what is your advice? How did you get over it? Does it just take time?

It almost seems like ALS anxiety should be it's own distinct type of health anxiety!

Fishmanpa
10-12-16, 03:14
The ALS rabbit hole is deep and narrow. Many get stuck in that hole and it's sad to see. Of all the fears I've seen on the boards, it's of the most difficult to get out of. At the same time, it's one of the most irrational fears of all the fears I see on the boards. When you come to realize how irrational it is, that will be the turning point. How and when that happens is up to you. I've found that no amount of reassurance helps. It's a self realization on your part.

That's the point of the "been there done that" threads. Those that have been there came to that realization on their own. Hopefully, you will too!

Positive thoughts

panicperson
10-12-16, 09:30
I I would say that time helps; obviously due to the longer you go the more you realise your not deteriorating like typical ALS patients.
I still have twitches I have them daily and at the moment I feel them in my side. But I've now learnt to accept them and ignore them. If you read my posts I feared als around 3. Years ago.

emmegee
10-12-16, 12:56
Of all the fears I've seen on the boards, it's of the most difficult to get out of. At the same time, [I]it's one of the most irrational fears of all the fears I see on the boards.

Good point. I'm guessing the magnitude of irrationality with this fear is directly proportional to the atrocity of this particular disease.

I agree my fear is very irrational (I do not have any of the three first diagnostic symptoms), yet I am unable (yet) to let go of the fear because it is so very frightening to me.

I had a MS fear/scare a few years back and although it was a very low point and put me into anxiety mode for months... I was not as frightened of that disease overall and thus it was a more rational fear. (I had several valid symptoms for that disease at the time)

Thanks again for your reply. :)

beatroon
10-12-16, 13:39
Hey there,

I too wasted a year to 'the ALS fear'! It's such a funny one isn't it, because you know logically there's nothing to worry about. But that just illustrates the odd nature of the illness, which is basically a form of OCD where you believe irrational things with one part of your brain whilst logically knowing those irrational things won't come true with the other part.

I guess that medication and mindfulness have helped me, and it's great that you are able to see through the fear with the rational part of you!

Good luck xx

Colicab85
10-12-16, 23:40
Time is the big thing as mentioned. Firstly twitching is almost never the first symptom plus if you've been twitching for several months/years and nothing's happening then it isn't ALS.

emmegee
11-12-16, 00:10
Funny, twitching is not anything I have experienced. I know that is the one symptom that most freak out about. I've never had it. I have decreased dexterity in my left hand (index finger and thumb) that seems to proliferate "when I think about it" and also some mild cramping in left hand. Also perceived weakness in my left arm which is completely anxiety related.

This all came about after someone I knew was diagnosed with ALS.

And yes, I can rationalize but unfortunately as of yet, I am unable to believe the rationality for a prolonged period of time. I seem to have a "panic time" every day that comes out of the blue when I try to do something and notice my index finger feels like it did it differently than usual or I'm relying on other fingers more for tasks. Sends me in a downward spiral. I keep hoping for when I can get through one day without that panic. It's so uncomfortable I fear it from the moment I wake up.

Thanks guys!

---------- Post added at 18:10 ---------- Previous post was at 18:07 ----------


Hey there,

I too wasted a year to 'the ALS fear'! It's such a funny one isn't it, because you know logically there's nothing to worry about. But that just illustrates the odd nature of the illness, which is basically a form of OCD where you believe irrational things with one part of your brain whilst logically knowing those irrational things won't come true with the other part.

I guess that medication and mindfulness have helped me, and it's great that you are able to see through the fear with the rational part of you!

Good luck xx

Well said, I do think I have a bit of OCD so that fits. I started meds a week ago and downloaded a couple mindfullness/relaxation apps for my phone and they have been helpful. I try to do them every day. :)

Sparkling_Fairy
11-12-16, 00:11
I I would say that time helps; obviously due to the longer you go the more you realise your not deteriorating like typical ALS patients.
I still have twitches I have them daily and at the moment I feel them in my side. But I've now learnt to accept them and ignore them. If you read my posts I feared als around 3. Years ago.

I would fully agree with this! ALS patients deteriorate really fast.
Once I had my twitches for 3 months but I realized nothing else was wrong with me, I figured it wasn't ALS. I still had that fear now and then, but now over a year later I still have the occasional twitch and I know for sure now it isn't ALS.

Also knowing that muscle twitches is one of the later stages of ALS and numbness/tingling etc... isn't a sign of it either, not being physically able to move a certain part of your body is a sign.

Once time passed, and I got a proper picture of what the symptoms of ALS actually are, my fear disappeared.

nj
12-12-16, 16:03
I too wasted a year or so on an ALS fear about 10 years ago. Some words stick out in your post: "When I think about it" and "perceived."

That was the thing with me and the ALS fear. The more I thought about it, the clumsier I became. And, in turn, my twitching would get worse.

After about 8 months or so and realizing I wasn't getting any weaker, the ALS fear just sort of faded away. It will pop it's ugly head every so often but goes away just as quickly.


Funny, twitching is not anything I have experienced. I know that is the one symptom that most freak out about. I've never had it. I have decreased dexterity in my left hand (index finger and thumb) that seems to proliferate "when I think about it" and also some mild cramping in left hand. Also perceived weakness in my left arm which is completely anxiety related.

nivekc251
14-12-16, 06:58
Sad to say for me it was time. The longer you go on without weakness the better you feel finally u realize that you wasted a year worrying about something u don't have lol. Stay busy and exercise. That helped distract me from worrying

emmegee
14-12-16, 12:22
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.

Iker20
14-12-16, 16:51
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

Colicab85
14-12-16, 17:39
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.

emmegee
14-12-16, 21:41
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...

emmegee
01-01-17, 17:32
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.

Fishmanpa
01-01-17, 17:48
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

Mango2
01-01-17, 18:00
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.

Colicab85
01-01-17, 18:14
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.

Iker20
01-01-17, 19:13
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

Fishmanpa
01-01-17, 20:04
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

darkside4k
01-01-17, 20:32
90% of ALS cases start with drop foot, slurred speech or profound hand weakenss, the other 10% are respiratory onset

Where are these stats from?

emmegee
01-01-17, 20:44
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.

I did read posts on the ALS forum a month ago when this fear started, mostly because that is where the google searching took me to. I have stayed away since then, and never joined or posted.

I have been pretty good about avoiding the internet (except for this forum) but I did have a bit of a relapse recently and read some "real stories" on the ALS association website. A moment of weakness :(

Colicab85
01-01-17, 21:08
I did read posts on the ALS forum a month ago when this fear started, mostly because that is where the google searching took me to. I have stayed away since then, and never joined or posted.

I have been pretty good about avoiding the internet (except for this forum) but I did have a bit of a relapse recently and read some "real stories" on the ALS association website. A moment of weakness :(

It's hard. I know it is, I've been there myself.

I got myself really bogged down in blogs and stories of demise and deterioration and made myself feel a lot lot worse.

darkside4k
01-01-17, 21:19
Have any of you ever had consistent muscle soreness and fatigue in your arms? That's what I'm struggling with right now. :/

Iker20
01-01-17, 21:30
Where are these stats from?
Its a number frequently quoted on the Do I Have ALS sections of the als forums, if you read most diagnosed cases yourself you will see such trend, considering 70% of PALS are limb onset, 25% bulbar onset and 5% respiratory or atypical onset

---------- Post added at 20:30 ---------- Previous post was at 20:22 ----------


Have any of you ever had consistent muscle soreness and fatigue in your arms? That's what I'm struggling with right now. :/

Thats what im struggling with right now, I seem to get more soreness from working out than normal, and my muscles seem to get fatigued more easily, pretty sure its just mental though, keep in mind anxiety can cause muscle soreness and fatigue trough tension, and the fatigue can be mental, if you have ever worked out you surely have noticed that while lifting weights if you are really focusing on the muscle being worked it gets fatigued or burns more easily, thats simple because you are tensing the muscle subconsciously by thinking about it automatically, nothing to be worried about

Sixpack
01-01-17, 21:50
The ALS rabbit hole is deep and narrow. Many get stuck in that hole and it's sad to see. Of all the fears I've seen on the boards, it's of the most difficult to get out of. At the same time, it's one of the most irrational fears of all the fears I see on the boards. When you come to realize how irrational it is, that will be the turning point. How and when that happens is up to you. I've found that no amount of reassurance helps. It's a self realization on your part.

That's the point of the "been there done that" threads. Those that have been there came to that realization on their own. Hopefully, you will too!

Positive thoughts

COMPELTELY AGREE WITH FISHMANPA!!!!


To be honest, I almost always refrain from posting on ALS threads because the peeps are really sucked into it and there is precious little anyone can do or say to dissuade these peeps to give up on this basically (and sorry if this is rude of me to say) 'HA fantasy disease'

HOWEVER. full disclosure on my part: I will say about 20 years ago I briefly latched onto the disease. Thank goodness the shrink I saw literally LAUGHED in my FACE. That was enough to bring me back to my senses.. I went back to MS for a while...but I didn't have that either :yesyes:

So, again, I agree with Fish.

Good luck and be well

emmegee
01-01-17, 23:35
Thanks everyone for taking the time to reply. I appreciate all the "pearls of wisdom" in helping me through this struggle.

I'm no stranger to HA scares but this one seems especially hard to find my way out of (as FMP states). I find it so frustrating because my logical mind is constantly battling this fear driven emotional catastrophic scenario. I just told my therapist last week that I think I may be going crazy. She laughed and said "people who are going crazy don't recognize they are going crazy". I would have thought I would have knocked some sense into myself by now...

I also think the nature of this disease scares me because I have become a super-worrier the older I get. At 45, I am a single parent to a 12 and 15 year old. My ex (their father) is an alcoholic and unable to care for himself. I am the sole provider for my kids and I worry about what would happen to them if anything were to happen to me. :(

Sixpack
02-01-17, 00:04
. also think the nature of this disease scares me because I have become a super-worrier the older I get. At 45, I am a single parent to a 12 and 15 year old. My ex (their father) is an alcoholic and unable to care for himself. I am the sole provider for my kids and I worry about what would happen to them if anything were to happen to me. :(


Which is why you do this to yourself. You have a great deal of responsibility and feel a loss of control as catastrophic.

Truth is NONE of us have REAL control over what happens in all aspects of our lives. There is no way you can keep all challenges from crossing your life and trying to is folly. Once you can truly accept this fundamental truth, is when you can start to gain some control over your HA. You will then KNOW this worry of yours solves nothing. It will neither protect you from illness nor cause it to happen.

---------- Post added at 18:04 ---------- Previous post was at 17:50 ----------

I have always felt HA stems from life's challenges or our views of life's challenges. HA is being used as a cover of our real issues in life--a big distraction.. For whatever reason we *think* dying of some disease is easier to deal with than things going on in life. Some of these difficult things we can fix and other things we cannot and we have to learn to deal with them as best as we can. We ALL have such challenges in life. My biggest challenge is properly caring for my eldest daughter who is severly disabled. I am always dealing with some issue with her. It is very difficult.

Ultimately all you can do in your situation is plan for the worst but expect the best. Toss away the idea of early death or diabilitating diseases. That is simply a lie your mind is creating to distract you from the real challenges (and joys) in your life.

emmegee
02-01-17, 00:11
Which is why you do this to yourself. You have a great deal of responsibility and feel a loss of control as catastrophic.

Truth is NONE of us have REAL control over what happens in all aspects of our lives. There is no way you can keep all challenges from crossing your life and trying to is folly. Once you can truly accept this fundamental truth, is when you can start to gain some control over your HA. You will then KNOW this worry of yours solves nothing. It will neither protect you from illness nor cause it to happen.

---------- Post added at 18:04 ---------- Previous post was at 17:50 ----------

I have always felt HA stems from life's challenges or our views of life's challenges. HA is being used as a cover of our real issues in life--a big distraction.. For whatever reason we *think* dying of some disease is easier to deal with than things going on in life. Some of these difficult things we can fix and other things we cannot and we have to learn to deal with them as best as we can. We ALL have such challenges in life. My biggest challenge is properly caring for my eldest daughter who is severly disabled. I am always dealing with some issue with her. It is very difficult.

Ultimately all you can do in your situation is plan for the worst but expect the best. Toss away the idea of early death or diabilitating diseases. That is simply a lie your mind is creating to distract you from the real challenges (and joys) in your life.

Thanks sixpack. Your words of wisdom are always so insightful and helpful. :)

GlassPinata
02-01-17, 00:14
Thanks in advance for your replies.

I am currently dealing with a HA ALS fear. In reading a bunch of other posts on the subject, I see a lot of responses like:

"I wasted a year of my life on fearing ALS"

i.e. it seems there are a lot of you that have "been there done that" when it comes to the dreaded ALS Health Anxiety. Many explain it was a very dark period of time before they got over it.

So what is your advice? How did you get over it? Does it just take time?

It almost seems like ALS anxiety should be it's own distinct type of health anxiety!



It is not a fear I've ever had, remarkably enough. And here I thought I'd had ALL of them. Lol.
Ex-boyfriend's mom suffered from ALS, but it was coming on very slowly, and she was still capable of doing many things.
I guess that's not the kind of thing that scares me, nor Alzheimer's. My fear is cancer (every type) and AIDS.... diseases that allow you to keep your cognitive facilities intact as your body rots around you.
ALS does not scare me.

darkside4k
02-01-17, 00:21
That's frightening. I'm worried I have ALS coming on via muscle aches even though I'm still able to do everything.

Sixpack
02-01-17, 00:31
That's frightening. I'm worried I have ALS coming on via muscle aches even though I'm still able to do everything.

It is only frightening because you have chosen to make it so.

Josh1234
02-01-17, 02:48
That's frightening. I'm worried I have ALS coming on via muscle aches even though I'm still able to do everything.

I'm not sure what it's gonna take for you to understand that muscle aches are not a sign of ALS. It's like saying "my foot hurts, I'm afraid I have brain cancer."

GlassPinata
02-01-17, 02:50
I'm not sure what it's gonna take for you to understand that muscle aches are not a sign of ALS. It's like saying "my foot hurts, I'm afraid I have brain cancer."

If you have health anxiety (even if it takes a different form, as mine does), you should be able to empathize with what they are feeling. It is REAL! As real as my thinking a swollen lymph node represents cancer. It's real, it's terrifying, it hurts. Let's be kind.

Josh1234
02-01-17, 02:55
It is not a fear I've ever had, remarkably enough. And here I thought I'd had ALL of them. Lol.
Ex-boyfriend's mom suffered from ALS, but it was coming on very slowly, and she was still capable of doing many things.
I guess that's not the kind of thing that scares me, nor Alzheimer's. My fear is cancer (every type) and AIDS.... diseases that allow you to keep your cognitive facilities intact as your body rots around you.
ALS does not scare me.

The mind is not affected in ALS. Patients are, quite literally, prisoners in their own crippled bodies, and lose the ability to speak or even move their head, while their minds are completely normal. That's why it's so terrifying for people.

---------- Post added at 01:55 ---------- Previous post was at 01:52 ----------


If you have health anxiety (even if it takes a different form, as mine does), you should be able to empathize with what they are feeling. It is REAL! As real as my thinking a swollen lymph node represents cancer. It's real, it's terrifying, it hurts. Let's be kind.

16 year health anxiety veteran here. You are doing a disservice to sufferers by not encouraging rationale thought. There are times when it's reasonable to have health anxiety about things, but for God's sakes, take yourself by the hand A LITTLE. A swollen node is reasonable fear, but you cannot just equate any and every symptom to a disease and expect people to be patient for very long. We have answered the same questions and told the same information to darkside4k endlessly, and he/she isn't listening, nor attempting to help themselves.

nivekc251
02-01-17, 03:42
Go to your doctor and tell them all of your worries. All we can really do is try to help you with your anxiety by typing comforting words. Go to your doctor or a neurologist and demand then schedule you an emg on the affected areas on your body. Tell them the anxiety is affecting the quality of your life, and you need reassurance from an experienced professional, but remember what everyone on here has told you once the doctor clears you and you start second guessing him or her. I'm sure your hand is cramping my hamstring is as I type, but anxiety makes a simple cramp seem crazy bad and a symptom of something horrible. Once the doctor clears you see a therapist it truly helps if you practice the exercises. It may not cure your HA but it helps you deal with it better.

swajj
02-01-17, 05:18
What a depressing thread.

Next time OP you might want to put a warning in the title.

None of you people have ALS for goodness sake. Most of you should avoid each other on this forum because you are just enabling each other.

Great post Josh.

emmegee
02-01-17, 12:42
What a depressing thread.

Next time OP you might want to put a warning in the title.

None of you people have ALS for goodness sake. Most of you should avoid each other on this forum because you are just enabling each other.

Great post Josh.

My apologies. One can never predict who might respond and what direction the thread may get directed. Fwiw, as the OP, I have found many of the responses helpful. I was not seeking reassurance regarding my symptoms, but appreciate the kind words of those who have been through a similar situation and their encouraging words on what it took for them to get through it.

Hancock
10-01-17, 18:08
Oof, this thread is a little tense. Figured I'd put in my two cents because at one point I was completely over the fear and just recently spiraled back into it. Maybe this would provide some tips of what NOT to do when you're feeling better.

I suffered from severe als phobia from September of 2015 up until January 2016 due to perceived weakness, muscle twitching, throat symptoms, tremors, and other weird things going on. Of course prior to that I had very minimal, normal anxiety symptoms that had gone somatic and googled and ended up on als. That's when my body went haywire. I went to a doc, said I was fine. Went to a neuro. Said I was fine. Questioned myself daily with strength testing, constantly sought out reassurance from my parents, my fiancée, and anyone who would listen to my incoherent ramblings. Finally got on medication after years of needing it and refusing. After a few weeks on the meds and them being slowly upped, my thoughts began to slow down and I was able to deferentiate the true from the false, my bodily symptoms also lessened, some went away completely and would only return when I had minor spikes in anxiety.

What helped initially was that and educating myself. Relating to people who had the same fears. Learning about the real disease process with neurologist approved information. After a while I completely let it go, lived fear free for 8 months (keep in mind, I was fear free while my fiancées friends father had gotten diagnosed with actual bulbar als).

And alas, I thought myself brace enough and strong enough and got off my meds without proper tapering or doctor consent. I wasn't at a high mg dosage by that point so I thought to hell with it, I'm fine. I was dead wrong. It's been three weeks since being off my meds and I crashed hard. The obsessions began to come back, little by little at first and then full force after I saw those three little words tethered to a facebook post. I lost it within the day. Back to body checking, googling, strength testing, and ruthless anxiety. Back to obsessing with the thought of dying young and crippled. Back to the selfishness and fear that locked me up a year prior. Back to insane twitching and perceived weakness on my right side. Back to waiting for the worst and wanting constant reassurance. Back to not living my life correctly because anxiety has once again hijacked it, and you know what? I let it.

I didn't even try to put up a fight.

So my advice to anyone and everyone who faces the als fear monster, when you get better, don't go back. Don't think about it. Don't even question it unless you fall down your stairs flat on your face. It doesn't exist. It's not in your body. It's in your mind. And no amount of neurologists, als specialists, anxious forum surfers, als patients, family members, spouses, emgs, or other medical tests will reassure you if you will not let the thought go.

And believe me when I say it's not an easy one to shake. I empathize. But we have to root down our fears to extinguish them. I know my fear is kicked back up because I just got a condo with my fiancée (bought), just got a good job at a bank, got out of medicine which I still don't know if it was the right decision but I can't go back now, and we're talking about starting a family. Of course my brain would whisper to me, as I flush my meds down the toilet, "well wouldn't it be excellent timing, Hancock, for you to be crippled and drying right now?"

Address the fear. Not the symptoms. Even people who have been diagnosed with als will ask why? And they'll try to go as far back as possible and relate everything to their disease. Isn't that what we do with anxiety and hypochondria? We try to go as far back as we can and try to figure out why we're so messed up? Everyone wants answers, sometimes they don't exist. We have to accept the state we're in to move on. We have to accept that yes, our minds can and will do this to us if we don't keep them on a tight leash. People with normal functioning brains might daydream about what they're going to do in a year, what vacations they'll go on, if they'll make a career change. Our brains are NOT NORMAL. There is an imbalance somewhere. We sit and daydream about kissing our loved ones goodbye one last time before we go. We daydream about sitting in front of the tv with a paralyzed body waiting for death. We think about all the things we can lose on a daily basis which is everything, unfortunately.

So why don't we hold tight to what we have now? That was my initial cure with the help of medication. I lived like I was dying, and I was happy because I wasn't focused on the what ifs down the line.

Someone posted earlier about control being a big factor in hypochondria and anxiety. That's so true. Everyone with anxiety and OCD wants control. We crave it. We keep the illusion that we have it. And when our beautiful, brilliant, but very broken minds realize we don't have it, we lose it. We obsess over it. We mourn the loss before it ever becomes a reality in our life.

This existence will continue to stay terrifying. But it will also continue to stay beautiful. The best quote I ever heard was "the only reason earth feels like hell is because of our expectation that it should feel like heaven".

We will hurt. We will ache. We will tremor and shake. Our bodies will lie to us, so will our minds. Eventually we all will get ill with something or another and chances are it won't be what we're so afraid of. Regardless suffering will come. That's the harsh reality. We have to understand that we won't live forever and that all we can do is utilize the time we have and be happy with what we got. Feel me peeps?

I feel for all of you. Our struggle isn't easy. No ones is. But we owe it to ourselves to try to lessen our expectations and live more in the moment. I believe that's the only cure for this incessant mental illness.

ww1399
10-01-17, 18:47
ALS is extremely rare and it progresses quickly. That's how I got over it. I finally told myself that I'm not one in a million and if my symptoms aren't getting progressively worse, I don't have ALS.

Fishmanpa
10-01-17, 19:14
We will hurt. We will ache. We will tremor and shake. Our bodies will lie to us, so will our minds. Eventually we all will get ill with something or another and chances are it won't be what we're so afraid of. Regardless suffering will come. That's the harsh reality. We have to understand that we won't live forever and that all we can do is utilize the time we have and be happy with what we got. Feel me peeps?

Amen! Read my signature ;) As we age, our bodies will betray us in some way shape or form. And the fact is, when something happens, not if, when... you'll deal with it.

And for those from AZ that deal with this ALS fear... here's a deterrent.... Do you want to become a "Stroud"? ;)

Positive thoughts

Hancock
10-01-17, 20:00
Amen! Read my signature ;) As we age, our bodies will betray us in some way shape or form. And the fact is, when something happens, not if, when... you'll deal with it.

And for those from AZ that deal with this ALS fear... here's a deterrent.... Do you want to become a "Stroud"? ;)

Positive thoughts

His name comes with so much infamy. I'm surprised he hasn't made his way here by now. :lac:

No one wants to be a stroud. God I felt so terrible for that man and his kid. Nothing consoled him.

Fishmanpa
10-01-17, 20:28
God I felt so terrible for that man and his kid. Nothing consoled him.

That's my point. The ALS rabbit hole is such a nasty, narrow and unforgiving trap. That fear, more than others, seems to totally cripple it's victims more than the actual disease itself!

It seems nothing at all helps. One must take it upon themselves to stop the cycle before it does to you what it did to him.

Positive thoughts

emmegee
14-01-17, 15:17
update: I have been doing so much better. I think the zoloft has finally kicked in, I am keeping busy and finding enjoyment in things again. My logical mind is doing the thinking most of the times, although I still have my moments. At least I am over the hump so to speak. What helped:
-time (its been three months since this began)
-zoloft
-klonopin
-yoga
-work (keeping me busy)
-any "activity" (I am helping my partner remodel a house he bought)

I also got my EMG results and they were normal. That helped too :)

Thanks again for everyone's kind and encouraging words of advice.

Hancock
14-01-17, 16:09
Medication is magic when it comes to OCD. I don't typically overly recommend medication for people who may just be going through an anxious or depressive bout unless it's severe, but it seems for people who have obsessive tendencies or act compulsively and really can't stop, it's a life saver.

Medication helped me immensely the first time I went through a hypo bout with this specific fear, and I just got back on it again because OCD came back with a vengeance (both in the hypo sense and in the sense that I couldn't let people touch the palm of my hands, and I was washing them raw and paranoid to eat food).

I hope the medication continues to help you, it definitely puts reason into our heads. Let's logic win out over emotions.

Nzxt27
14-01-17, 18:29
Going thru this fear right now. Was colon cancer fear nov/dec of last year. Got a clean scope now back to my twitching all over and fearing ALS.

melfish
18-12-17, 07:44
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...

I know this thread is old, but this is EXACTLY how my mind is working right now ...

MoleHill
18-12-17, 19:22
I needed this thread today. I’m
Still struggling with this. I upped my Zoloft, which has helped tremendously, but man this rabbit hole is a tough one.

melfish
18-12-17, 20:18
I needed this thread today. I’m
Still struggling with this. I upped my Zoloft, which has helped tremendously, but man this rabbit hole is a tough one.

I am sorry you are going through this too. It's a terrible and overwhelming fear

atl
19-12-17, 06:25
Just want you folks to know you aren't alone in this. This fear is tough and even though I have been doing better I still struggle with checking my hands and feet for atrophy every day. Stay strong and just keep living your life.

melfish
19-12-17, 07:03
If your hands and feet are working just fine, there's no need to look for atrophy. You know that ...

atl
20-12-17, 07:07
I do. It's just so hard not to when your hands and feet are always right there...

melfish
20-12-17, 07:09
Yeah, I hear you. At least I can close my mouth when I come across mirrors. But the compulsion to check is strong :(
I'm still freaking out about my quivering tongue