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View Full Version : Hancock back with a vengence from Anxietyzone - ALS fears made it full circle



Hancock
09-01-17, 17:16
Hey there ladies and gents, not sure if some of my fellows from Anxietyzone made it over here as our wonderful, neurotic site has been closed. It kind of came as a shock to me as I had not been active on the forums over there for the past eight months or so.

Well, it happened. I am in health anxiety hell again.

A brief history: back in August 2015 I had a full mental health relapse, and that included a barrage of somatic symptoms. Burning/tingling/numbness/pain/etc sensations during a week trip away from home visiting some friends. I've had hypochondria episodes before, and as luck would have it, I was about to spiral into another one. I convinced myself that I had MS, and began googling like crazy. Of course, the tie was between anxiety and MS but I was thoroughly convinced I was ill. When I came back home, I continued to google and stumbled upon three not so pleasant letters (ALS). I noticed twitching was a symptom and weakness. Well I already felt weak but that was definitely the MS, so I dismissed it. Lo and behold a few hours later and I began twitching from head to toe; I flipped out. Went absolutely batsh*t and dragged my sorry butt to my GP who told me anxiety and gave me medication. A week later I was back and he sent me to a neuro for peace of mind. When I went, she did all the neat things they do (she was a specialist who trained at Cleveland Clinic) and spent about an hour with me, testing me, and listening to my nonsense.

She concluded it was anxiety, saw no muscle loss or wastage, no weakness, no spasticity, and my reflexes were normal, thus no need for further investigation.

I then hopped onto the anxietyzone board because of course I did what all good hypos do and doubted her diagnosis. I googled myself into a mental wreckage by seeing all the good things you can dig up on this tragic disease: yes, there were people in their 20s and 30s being diagnosed (I'm 22, by the way), yes sometimes twitching comes before weakness (usually 6 months, rarely a year), sometimes progression is slow, sometimes it can be missed by the docs, but for the most part people notice a very clear deficit in their speech, coordination, and strength along with twitching (if they even notice that).

So here's my dilemma. I am now 1 year and almost 5 months into my twitching garbage. I got off my medication a few weeks ago thinking I had conquered the beast and was free to go. I was wrong. I obviously began having some somatic symptoms again after getting off my Paxil regiment, and I ignored them. As the withdrawal continued, I stumbled upon those three little letters again on facebook a few nights ago. I don't know what happened but my mind just broke. I began imagining it again, that this was happening to me. I tried to look back at all my time and nothing apparent happening but it didn't help.

I just bought a condo with my fiancee and we're a week away from moving in. We are planning on starting a family within the next year or two. We adopted a little chihuahua 5 months ago thats become my best friend. I just got a good job at a bank. I fear the loss of these things more than I fear anything, and I know thats what my brain is playing at, but I can't shake what my body is doing to me.

My right side feels weak, I feel as though I can still do everything I could previously although with a bit of exhaustion (and of course, since I've been having panic attacks every day, I'm sure thats a contributing factor), my twitches have kicked up a notch, my left shoulder and arm feel clumsy, and my left leg does as well. I've been self testing again and I have passed all the typical tests the neurologist did on me over a year ago. I can't see progression as being this slow obviously, but now I'm stuck on "what if this is new?".

I'm an absolute wreck. I can barely eat, I don't want to shower, I don't do much besides work and come home and maybe not cry if I'm lucky. I'm a 22 year old female and I know statistics tell me 1 in 1,650,000.

But all i've been doing is torturing myself with videos. Reading articles. Reading about people's initial symptoms. It's been an obsessive compulsive hell I can't seem to break and I need some help. I started my meds again, going to the doc this thursday, and trying to keep it together but god knows I'm not doing the best job.

Please knock some sense into the person who used to knock sense into people daily. I'm just not doing good at all.

Josh1234
09-01-17, 17:23
Hi, Han. You know me, and helped me through my darkest ALS phobia. You know it's nonsense. There is nothing wrong with you. Paxil known for hellacious withdrawal. Either get back on the Paxil, or just rough it out for a bit, but you know damn well you don't have ALS. You know far too much about how it works and what it looks like. Stop the madness!

SLA
09-01-17, 17:26
So, looking at your post I can see that you are obviously aware that there is most likely nothing wrong. It's good to see someone on here who is actually self-aware, and can rationalise parts of there problem.

A few things stand out. You are still focussed on "finding reasons" why you do have it, rather than why you don't.

You've panicked yourself into believing you do have MS/ALS, and when you do that you look for reasons to validate it. Then it becomes a belief. "I must have it!"

Then you panic again, find evidence to support it, and the belief becomes stronger. Before you know it you're tired, anxious and depressed.

At some point you need to break the cycle. It's all an illusion created from fear.

Rationalise each aspect of it individually, and do not build it up into "this big thing."

Also, get on top of your diet. If you're not eating well, it will only make your anxiety worse.

Colicab85
09-01-17, 17:40
Also, as a fellow ALS anxiety sufferer, you must stop your googling immediately.

I became bogged down with terrible stories and things and it just made everything so much worse. My belief and the googling of stories caused massive depression which I'm still struggling with. I'm sure you know this but the sooner you quit it the better.

Fishmanpa
09-01-17, 17:55
There are a lot of AZ folks that came here Hancock. Also a lot of ALS threads recently too. It must be ALS and Lymph node season ;)

I recall some of your threads on AZ. The ALS rabbit hole is deep and narrow for sure. To add what others are advising, under no circumstance visit, join or post on an ALS forum. It's extremely disrespectful to those actually suffering.

Positive thoughts

AntsyVee
09-01-17, 18:13
Hey girl! Nice to hear from you, though I wish it was not under these circumstances. I came over here too to stay in touch with people, even though they have no PTSD place I can see. I may talk to their admin about adding one.

I think it's time for you to accept you're just gonna have to stay on the Paxil. I've accepted that I'm staying on Lexapro, even if my PTSD is getting better. Some of us are just prone to anxiety from birth, and that's the way it it with us. So we stay on the meds. Could be worse. At least we found meds that work.

Sphincterclench
09-01-17, 20:29
Hey Hancock, I remember you from AZ

meds arent such a terrible thing. as long as I dont have to spiral again to that very dark place where I spend all of my time waiting for death to take me or considering taking matters in to my own hand to avoid the wasting from whatever disease dujour I was obsessing over

I will take the meds every time.

nivekc251
09-01-17, 21:44
Anxiety is like having your fist clinched and holding onto whatever it is you're fearing, and your hand is stuck in a tree knot. The only way to get out of it is to let it go. You know when your mind is anxious anything you read you compare it to yourself and latch onto it. When you aren't anxious you can read the same thing and get a peace of mind and realize how u differ from individual. You know the red flags and you know you don't have them it's just a fear of developing them. Let it go dawg do it for the poor souls who actually have the disease. This is what I keep telling myself lol u got this $hi+ :shades:

SadguyFL
09-01-17, 23:33
Medicine is what saved me from my deepest low I've ever had a few years ago. Of course it's not the answer to everything as I'm currently going through a huge fear. But it does help.


Hey Hancock, I remember you from AZ

meds arent such a terrible thing. as long as I dont have to spiral again to that very dark place where I spend all of my time waiting for death to take me or considering taking matters in to my own hand to avoid the wasting from whatever disease dujour I was obsessing over

I will take the meds every time.

MyNameIsTerry
10-01-17, 06:20
Hi, Han. You know me, and helped me through my darkest ALS phobia. You know it's nonsense. There is nothing wrong with you. Paxil known for hellacious withdrawal. Either get back on the Paxil, or just rough it out for a bit, but you know damn well you don't have ALS. You know far too much about how it works and what it looks like. Stop the madness!

Yeah, it's one of the worst two along with Venlafaxine. I've read before that these can bring those electric shock twinges so I'm wondering whether some of those could be getting bundled in with the ALS symptoms worries?

Hancock, all those compulsions you are doing are not only trapping you but are also spiking your anxiety. I'm an OCD sufferer and my compulsions dragged me deeper into the spiral. What can you do to resist them? What can you do to eliminate them? This means sitting with your thoughts and resisting urges but the more you do this, the more they will become less needed to you. It took me years to stop mine as there were so many different aspects (I'm not a HAer) but it really does help.

Hancock
10-01-17, 06:45
Josh: My god, am I glad to see the wheels have turned and you're kicking my butt into gear instead of me doing it to you ;) I know deep down in my rational mind that the chances are basically none, especially with no family history of any neurological deficits at all. But of course, the irrational mind screams the opposite. I have an appointment with my doc this thursday to adjust my med dosage again and get me back up to where the OCD was controlled. I came off them without really tapering or consulting him. I knew the withdrawal was going to be bad, and I definitely had some issues with my stomach/sweats/nausea/dizziness/etc and when that seemed to sort of wane the OCD thoughts and crazy death scenarios all came flooding back. FML, right?

SLA: Thats some beautiful advice, advice I remember giving fondly to many of the kiddos on anxietyzone, it's crazy how quickly we revert when we don't consistently supplement the thoughts of horror with thoughts that are positive in nature. I know in a sense I seek "reassurance" through reading the articles, watching the videos, and all that junk (since I can't possibly have what they have, right?) but all it does is just instill more fear in me. I become more symptomatic, more depressed, and more focused on the grim realities of life which just feeds into the never ending cycle. And I know ALS and MS are some of a hypochondriacs favorites to obsess over since an anxious nervous system is always in overdrive. I mean, there's literal websites dedicated to the comparison between hypochondria and ALS-phobia, if that doesn't show some ridiculous and very anxious commonality in the way we experience physical anxiety, I don't know what does.

Colicab: You're absolutely right, we both need to stop googling because all it's doing is feeding the machine. There is no reassurance in those stories or articles, and those people are truly struggling (although, most have more enthusiasm and better attitudes than we do surprisingly enough) and for us to cling to someone else's suffering to reassure ourselves isn't healthy. I hope you know we'll both come out of this alright, anxiety and depressive relapses happen and this fear can be crippling. I feel for you as I've battled it once and am unfortunately in the throes of it again.

Fish: Glad my name got some kind of a rep ;) yeah it seems to be the season again, it sucks that these fears trail people around so incessantly. I thank you for your advice, and will never find myself on those boards. Ever. I don't even humor myself by trying to read posts on there. There are way too many people with anxiety problems who probe and probe these individuals who are truly not doing good, it's not right. What amazes me is they will try to reassure the anxious peeps even though they have no right to be there, it blows my mind. More strength that I, it seems.

AntsyVee: Oh my gosh girl! So glad to run into you here (albeit, would be better if it were not under another crisis). A PTSD board would be pretty cool, I have yet to explore this site as I just joined this morning during a panic attack, hah. And I think you're right. I've been a friggin' hypo, depressive, anxious little thing since I was a kid. I was basically normal on Paxil for an entire year, it was bizarre. No anxiety attacks. Thoughts would just come and go. No rituals. No intrusive and bizarre scenarios playing in my head. Just this kind of numb normalcy that wasn't too bad. Of course I'm stubborn and had to stop, but thats just me ;)

Sphincter: I can't remember if your name was the same on anxietyzone (I wanna bet it is because I laughed so hard the first time I saw it and I was near tears from laughing when I saw you posted on this thread, I love it). But honestly, I couldn't agree with a sentiment more. Afraid of death but all I want to do is blow a hole through my head because I can't stand the idea of some debilitating disease taking me out. It makes no sense. Meds are the better alternative 100% of the time. I'll definitely be speaking to my doc this thursday about all of this, hopefully I can either just restart my Paxil at 20mg or he can experiment with something else.

Niv: My boy! Glad to hear from you, and glad one of my anxietyzone kiddos is coming back to kick my ass around a bit. You know, the crazy thing is after I got on Paxil and stabilized my fiancee acquired a sponsee (12 step program) whose father had bulbar onset ALS. First time I've ever heard or seen of a person around me having it. The interesting thing is, it didn't scare me. The Paxil basically separated real life from my thoughts. My fiancee would tell me about him, and how the disease was progressing every time he got together with his sponsee and it didn't bother me a bit. I felt terrible for the man, I knew he was struggling but also that he was trying to enjoy what time he had left. Last I heard, he opted out of all life extending treatments but his wife didn't want that so he opted for a feeding tube. The crazy thing is, we all fear losing control with anxiety. But in reality, even in the worst moments of our lives, we continue to be able to get to choose; and thats one of the only things that can bring me peace during times of extreme anxiety and OCD about this garbage. But you're absolutely right and I thank you for your comment mayne.

Sadguy: I'm assuming your current fear is associated with the topic in this thread? Meds are definitely a godsend, but they're not an absolute fix all. We still have to do the work, sigh.

Iker20
10-01-17, 07:05
The statement that twitching can come before weakness in ALS is completely false, there are anecdotal cases (DR eisens study in which he mentions 6.7% of a base of als patients mentioned ANECDOTALLY that the first symptom they REMEMBERED was twitching or de carvalhos case were a 72 year old man had a HISTORY OF FALLS and then started getting twitching which wasnt associated with any weakness at the time (hello, falling)? There is no single study or medical evidence that points that twitching is possible without weakness in ALS, if so please point me to it, any ALS specialist will tell you its impossible to twitch without weakness or that at the very least, its extremely uncommon and rare, meaning your odds are even lower than the 1,650,000 you mentioned which are actually much lower than that, I believe you took that number from a page of a teen girl called jenny with als whose odds of having als before 25 where 1,650,000, thats actually counting familial ALS which accounts for probably more than 60% of als cases in younger than 25 people, your odds counting your age and no familiar history plus extremely atypical presentation are probably closer to a couple hundred million

AntsyVee
10-01-17, 10:33
Hey...off topic here..

But does anyone know if Leroy or Sjade made it over here?

Hancock
10-01-17, 15:52
The statement that twitching can come before weakness in ALS is completely false, there are anecdotal cases (DR eisens study in which he mentions 6.7% of a base of als patients mentioned ANECDOTALLY that the first symptom they REMEMBERED was twitching or de carvalhos case were a 72 year old man had a HISTORY OF FALLS and then started getting twitching which wasnt associated with any weakness at the time (hello, falling)? There is no single study or medical evidence that points that twitching is possible without weakness in ALS, if so please point me to it, any ALS specialist will tell you its impossible to twitch without weakness or that at the very least, its extremely uncommon and rare, meaning your odds are even lower than the 1,650,000 you mentioned which are actually much lower than that, I believe you took that number from a page of a teen girl called jenny with als whose odds of having als before 25 where 1,650,000, thats actually counting familial ALS which accounts for probably more than 60% of als cases in younger than 25 people, your odds counting your age and no familiar history plus extremely atypical presentation are probably closer to a couple hundred million

Oh I'm a sucker for statistics. That quelled my fears last night, slept like a baby so thank you for that. Have you done a lot of research into the topic due to your own fears or morbid curiousity? (If you don't mind me asking). I am aware that most juvenile/young adult cases seem to be familial, some appear to be related to certain risk factors like hardcore sports through school or military service and typically present in males over females. The fact that I've never played sports, never served, and don't have a familial history of als or any neurological deficits serves as a comfort. The twitching doesn't bother me much anymore as it's been around for well over a year, all over my body, with some minor hot spots here and there.

From what I know (and hopefully you can shed a little more light on this because you seem to know your stuff) twitching in als if ever presented body wide typically comes after some sort of functional weakness that can be measured without the person necessarily feeling weak. From what I've also read, body wide twitching without noticeable atrophy or true clinical weakness means nothing as this is a definite sign of current disease and rapid progression. The only time I've really heard of body wide twitching presenting with no symptoms of weakness is bumbar (so speech becomes affected) or respiratory (in which there is no weakness but in the diagphragm)...both expceptionally more rare than it's limb onset counterpart and basically unheard of below the age of 55-60.

Now, let me pick you brain a bit since you seem to have read plenty of articles, as have I. For the most part I've read from people diagnosed that their first noticeable symptom was the inability to do something basic (like clip their nails, bring a cup of coffee to their mouth, open a bag of chips, use a can opener, etc) and very rarely have some noticed twitching prior to onset of clinical weakness (I think the only case I read was a year prior to onset a younger man experienced twitching but I think I recall it was localized). The docs knew something was up in his case regardless I think.

So when we speak of true weakness, we know we're talking clinical. The inability to do certain actions. We know it can be measured. But, what I want to ask you is does clinical weakness ever present as fatigue in a limb prior to true onset? I think that's what most of us who struggle with anxiety induced weak feelings struggle with. I've heard failure over feeling all over als sites. I've heard it said to anxious people from patients. And then I've read contradicting information, but usually with relatively rapid progression or noticeable atrophy even if the limb isn't fully paralytic yet.

I really appreciate your post and your knowledge, as I'm sure everyone else does. It would be nice to get your opinion on these arguments.

---------- Post added at 14:52 ---------- Previous post was at 14:51 ----------

Vee, so far I haven't seen them around :(

Iker20
10-01-17, 18:08
Oh I'm a sucker for statistics. That quelled my fears last night, slept like a baby so thank you for that. Have you done a lot of research into the topic due to your own fears or morbid curiousity? (If you don't mind me asking). I am aware that most juvenile/young adult cases seem to be familial, some appear to be related to certain risk factors like hardcore sports through school or military service and typically present in males over females. The fact that I've never played sports, never served, and don't have a familial history of als or any neurological deficits serves as a comfort. The twitching doesn't bother me much anymore as it's been around for well over a year, all over my body, with some minor hot spots here and there.

From what I know (and hopefully you can shed a little more light on this because you seem to know your stuff) twitching in als if ever presented body wide typically comes after some sort of functional weakness that can be measured without the person necessarily feeling weak. From what I've also read, body wide twitching without noticeable atrophy or true clinical weakness means nothing as this is a definite sign of current disease and rapid progression. The only time I've really heard of body wide twitching presenting with no symptoms of weakness is bumbar (so speech becomes affected) or respiratory (in which there is no weakness but in the diagphragm)...both expceptionally more rare than it's limb onset counterpart and basically unheard of below the age of 55-60.

Now, let me pick you brain a bit since you seem to have read plenty of articles, as have I. For the most part I've read from people diagnosed that their first noticeable symptom was the inability to do something basic (like clip their nails, bring a cup of coffee to their mouth, open a bag of chips, use a can opener, etc) and very rarely have some noticed twitching prior to onset of clinical weakness (I think the only case I read was a year prior to onset a younger man experienced twitching but I think I recall it was localized). The docs knew something was up in his case regardless I think.

So when we speak of true weakness, we know we're talking clinical. The inability to do certain actions. We know it can be measured. But, what I want to ask you is does clinical weakness ever present as fatigue in a limb prior to true onset? I think that's what most of us who struggle with anxiety induced weak feelings struggle with. I've heard failure over feeling all over als sites. I've heard it said to anxious people from patients. And then I've read contradicting information, but usually with relatively rapid progression or noticeable atrophy even if the limb isn't fully paralytic yet.

I really appreciate your post and your knowledge, as I'm sure everyone else does. It would be nice to get your opinion on these arguments.

---------- Post added at 14:52 ---------- Previous post was at 14:51 ----------

Vee, so far I haven't seen them around :(

Yes, my fear of ALS caused my morbid research, and I recently (1 month ago) started a neurology course in my university with the best MND specialists in latin america and I have asked several of them, is twitching in ALS possible without weakness? The vast consensus is that no, its completely impossible, only one MND specialist said that it was possible for a small period of time (1 or 2 weeks at most) to notice the twitching before weakness occurs, but that is extremely rare and atypical, twitching is a byproduct of dead neurons trying to reinnervate, if your twitching was from ALS it would mean already dead neurons are trying to reinnervate so how in the world would one not notice obvious unmistakeable weakness when the motor neurons controlling the muscle are dead and attempting to reinnervate??? Its impossible, any.MND specialist will second that, and as you know, and im sure you have read thousands of first hand stories, 90% of ALS stories start with slurred speech, foot drop, or hand weakness, "my friends kept asking me if I had been drinking because of slurred speech" "I kept falling over and was unable to move my toes in one foot up or down" "my grip strength diminished, I was unable to open locks with my keys'... in 90% of als cases the story begins with obvious clinical weakness that goes on without attention for 1 or 2 months, then go to a gp who suspects benign condition or orders innecesary tests, after 1 month of no improvement go to neuro, neuro suspects something more, by this time more symptoms (twitching, cramps, atrophy) after 1 or 2 months EMG and diagnosis... the other 10% are people as you say who had respiratory onset or other atypical onset but as I said, if they mention twitching aa their first symptom thats anecdotal and contradicts all the knowdlege medical community has about ALS... may there be some cases in which geniunely twitching could have been one of the first symptoms??? There has never been one solidely established and proved in the history of medical neurology, that there might be at least 1 person in history which started that way??? Sure it might, then again the odds of it being you at 22, no familiar history, atypical presentation at time transcurred since your twitching onset and no weakness (1 year) makes your odds guesstimate 1 in 400,000,000 do you want to play by those odds? You have better odds of winning the lottery while being struck by lighting twice... I dont think you are that unlucky, and by the way, you asked if a "fatigued" feeling is the weakness als suferrers first experience and if you mean fatigued like your muscles get fatigued more easily with everyday activites the answer is NO, actually that feeling is used to diferrentiate the diagnosis of ALS from mimics, in myasthenia gravis, lyme disease, in a severely anxious state due to hyperawareness which leads to muscle tension, its quite a common symptom to get a burning fatigue feeling with everyday activites, while in ALS, if you go to the als forums, many people have asked PALS if they ever experienced that and not a single person that im aware have ever said yes, they mention they didnt feel anything and felt completely normal, they would just try to move a muscle and it wouldnt work correctly, hope that helped

Brian_VA
10-01-17, 18:15
Hey, I'm also from anxiety zone. I had a friend who had ALS and it was obvious that something was wrong prior to his diagnosis. Try to get yourself out of the "what if" loop. When you say "what if" you are basically saying "let's pretend that.......". It's just thoughts and thoughts can't harm you.

Hancock
10-01-17, 19:57
Iker: aren't you a lucky dog hanging with neurologists in your classes? I regret not coming down with this ridiculous fear while I was still studying medicine as one of my anatomy professors was a neurologist with 25+ years of experience. It would have been great to pick his brain. But I'm glad they're all basically in agreement. Everyone I've talked to has twitched at least at one point in their lives, some more than others, and others constantly. They're not all coming down with als obviously. So I think in those rare cases that say "oh I twitched for two years or five years or whatever" isn't clinically significant to their diagnosis. It's like comparing a head ache that you had when you were 20 to a brain tumor they find when you're 25. There's no relation between the two, the clinical timeline wouldn't match.

And I feel the reason people take a while to come to a diagnosis and sometimes it takes one or two emgs is because while doctors are mostly certain in the beginning, no one wants to hand down a death sentence without being absolutely, without a doubt sure. Maybe you should show your professors this thread so they can have a good laugh at all of us losing our minds over this.

I think a lot of people experience fatigue. If you're a living, breathing being you're gonna get burned out at some points in your life. That doesn't mean it will lead to something sinister. I've had issues diagnosed (pelvic floor dysfunction and myofascial pain) due to high anxiety and prior trauma. I wouldn't be surprised if a lot of the symptoms we feel can even be related to fibromyalgia because our nerves are so shot from the constant panic. I have so many tender points in my muscles it's insane.

I've read a lot of stories where it's like the basic stuff just goes. Can't push down on a gas pedal one day, or pick up a kettle of water, or a cup of coffee, or open a bag of chips when the day prior you could. It seems to be very obvious for most, and of course like you said, they may ignore it for a bit before realizing it's not getting any better.

Brian: I'm sorry to hear about your friend :( if you don't mind me asking, would you possibly disclose his initial experience and age? Might calm down some of the worried kiddos on here. But you're right, we're basically playing nightmare pretend. It doesn't make sense. When people are sick they don't question it and get anxious. They know something is not right and seek help, not spend months on an anxiety board thinking "what if?" Vicious cycles.

Iker20
10-01-17, 20:58
Iker: aren't you a lucky dog hanging with neurologists in your classes? I regret not coming down with this ridiculous fear while I was still studying medicine as one of my anatomy professors was a neurologist with 25+ years of experience. It would have been great to pick his brain. But I'm glad they're all basically in agreement. Everyone I've talked to has twitched at least at one point in their lives, some more than others, and others constantly. They're not all coming down with als obviously. So I think in those rare cases that say "oh I twitched for two years or five years or whatever" isn't clinically significant to their diagnosis. It's like comparing a head ache that you had when you were 20 to a brain tumor they find when you're 25. There's no relation between the two, the clinical timeline wouldn't match.

And I feel the reason people take a while to come to a diagnosis and sometimes it takes one or two emgs is because while doctors are mostly certain in the beginning, no one wants to hand down a death sentence without being absolutely, without a doubt sure. Maybe you should show your professors this thread so they can have a good laugh at all of us losing our minds over this.

I think a lot of people experience fatigue. If you're a living, breathing being you're gonna get burned out at some points in your life. That doesn't mean it will lead to something sinister. I've had issues diagnosed (pelvic floor dysfunction and myofascial pain) due to high anxiety and prior trauma. I wouldn't be surprised if a lot of the symptoms we feel can even be related to fibromyalgia because our nerves are so shot from the constant panic. I have so many tender points in my muscles it's insane.

I've read a lot of stories where it's like the basic stuff just goes. Can't push down on a gas pedal one day, or pick up a kettle of water, or a cup of coffee, or open a bag of chips when the day prior you could. It seems to be very obvious for most, and of course like you said, they may ignore it for a bit before realizing it's not getting any better.

Brian: I'm sorry to hear about your friend :( if you don't mind me asking, would you possibly disclose his initial experience and age? Might calm down some of the worried kiddos on here. But you're right, we're basically playing nightmare pretend. It doesn't make sense. When people are sick they don't question it and get anxious. They know something is not right and seek help, not spend months on an anxiety board thinking "what if?" Vicious cycles.

I can leg press 800 pounds, yesterday I broke my bench press record at 265 pounds, I have studied ALS thoroughly and have been examined by 2 neuros 1 ALS specialist and im still scared about it... its ridiculous, by this point I know I have severe health anxiety, even though the symptoms feel so real, so I totally understand you, no matter what you are said or what you do or what tests says, the fear is so irrational nothing can help it, I know both you and me know deep down we are fine, but sometimes im so scared and im tired of feeling like this, ive had health anxiety before but never this bad, I hope I can get over it soon and I hope you get over it fast too, I know reassurance helps temporarily so if you have any more questions about ALS id be glad to help, and I do really hope you get better.

Fishmanpa
10-01-17, 21:16
Just an idea....I don't know if this will help but perhaps......

I suffer from real life health issues. Heart disease, nasty side effects from cancer treatment to name a few....

For me... when I was stricken with these illnesses and when I experience the after effects of them, it just bugged the living (&^@%# out of me. It's such a pain! Literally! I have too much to do and too much life to live as well as looking after my wife who is recovering from a major illness to be bothered with this crap! It pisses me off to be honest. So pop some pain relief, rub some Ben Gay on, put a pain patch here and there and get on with it.

So when this (with respect) totally irrational fear comes into your mind, what's stopping you from taking the same attitude? I mean seriously, think about how much of your time and energy is being taken from you by something so irrational. Doesn't that piss you off? Don't you want to beat the living *&~@%# out of that thought?

Perhaps instead of worrying, find a punching bag and make the bag the ALS fear and beat the living daylights out of it. AND... doing so proves you don't have it right?

Positive thoughts

Hancock
10-01-17, 21:33
Iker: there's no way you'd be doing what you do if you were ill. I mean hell, there's no way we'd be able to do basic things if we were ill. I think we need to get that into our heads (as does everyone with the als phobia). It's not feeling, it's failure. A disease that severe doesn't play around, it isn't a guessing game as your neurologists and professors put it. And it's rare. So incredibly rare for our age group, in fact, that none of us on here that are freaked out about getting it with all our messed up symptoms are in actuality going to get it. Sure maybe we're at risk when we're in our 40s and 50s but so is everyone else. And everyone is at risk of everything (and the risks are LOW). We need to start living, that's the truth. The fact that this fear has ruined people's relationships, their jobs, their happiness, and their sanity is insane. It just needs to stop. But I appreciate your words and your knowledge, it really does help when someone is struggling. We'll be okay, we're all okay already.

Fish: you sound a lot like my dad right now, hah. I appreciate the that comment a lot. I wish I could type up a longer response right now but he cubicle is calling. But you're absolutely right, when something hits people that's when they deal with it. Quaking with fear and losing out on days that could be amazing is insanity. That's the definition we're living in: doing the same things and having the same thoughts over and over again expecting a different result. The rabbit hole is deep and ugly, and it needs to stop. For the sake of all of us and for the sake of those actually suffering.

Congratulations on kicking your cancers a$$ by the way. That isn't an easy fight.

roseanxiety
11-01-17, 04:03
Weren't you the person from AZ going to the Mayo Clinic for testing? Did you go and what did they say?

Hancock
11-01-17, 06:02
Weren't you the person from AZ going to the Mayo Clinic for testing? Did you go and what did they say?

If you're referring to me, no. I never went to mayo, never got a referral. Never even asked for one, I ain't spending that kind of money haha. I think you're referring to stroud13. He has some really severe anxiety related to als phobia and would post constantly. He thought he was doomed. Nothing we said helped him and he finally got a referral, although I wasn't around to find out if he actually ended up going or not because most of us were trying to talk him out of it (due to his very obvious hypochondria and the fact that he had a new born he should have been focusing on).

I've only ever been to one neuro over a year ago and that was after begging my gp. Got the same spiel most of the people here have gotten "everything looks normal, it's anxiety". Was fine for eight months after being put on meds then bam, back to the same old sh*t.

---------- Post added at 05:02 ---------- Previous post was at 03:51 ----------


Yeah, it's one of the worst two along with Venlafaxine. I've read before that these can bring those electric shock twinges so I'm wondering whether some of those could be getting bundled in with the ALS symptoms worries?

Hancock, all those compulsions you are doing are not only trapping you but are also spiking your anxiety. I'm an OCD sufferer and my compulsions dragged me deeper into the spiral. What can you do to resist them? What can you do to eliminate them? This means sitting with your thoughts and resisting urges but the more you do this, the more they will become less needed to you. It took me years to stop mine as there were so many different aspects (I'm not a HAer) but it really does help.

I'm sorry! I didn't even see your post amongst all the other ones. I wouldn't be surprised if it was still from the withdrawal. I know nerve symptoms are typical with Paxil withdrawal. I honestly wish it didn't work as well as it does or else I wouldn't be wanting to get back on it because I've heard that drug is h*** in the long run. The feelings in my right arm and leg are more like a hollow/numbness/weirdness. I can't really explain it. It just feels odd and not right. But I've been having little pain shocks through my body since coming off so that would make sense for the withdrawal.

Thank you for your input on your OCD battles. I suffer from the hand washing variant and also have some ridiculous rituals I've been unable to break for years. The health anxiety is just the cherry on top of an already annoying disorder. I know I just have to sit with the thoughts and avoid the compulsions but it's so difficult. I guess I just need to practice persistence and patience.

roseanxiety
11-01-17, 17:28
Oh yes, it was Stroud. Sorry to mistake you for him. Wonder if he is around? I hope your worries go away soon. I am struggling with some high anxiety right now so I know how you feel.

AntsyVee
11-01-17, 20:20
I don't think Stroud will be back. Everyone found out that he lied about being in the military and serving in Iraq. Also, he apparently had stuff on his facebook that contradicted the ALS symptoms he was claiming to have. Sad to say, but it looks like he was just a troll in need of attention.

Hancock
11-01-17, 23:54
Nurse: it always sucks when your rational mind can't beat out the irrational one.

Vee: you serious?! I didn't know any of that. I know he was bugging people on the als forum as well, that's so unbelievabley disrespectful and horrid. He's going to get what's coming to him, that's for sure.

darkside4k
12-01-17, 00:46
Hey Hancock,

Just wanted to let you know I'm going through something similar. My forearms in particular seem to get really fatigued. I'm also battling through the ALS fear.

Just letting you know we're in this together and seem to have similar symptoms. Feel free to PM anytime if you want to chat through things.

Hancock
12-01-17, 00:50
Thanks darkside (your name is suitable for the situation/fear) ;) likewise to you, feel free to message me any time if you need some help.

The ALS fear is a deep, dark, morbid rabbit hole to be in. And it's not easy to get out of. Advice for the moment: don't ever google als again. Seriously. I was fine for months and months and just recently slipped back into this hole because my hypo butt decided it was a good idea to do some further investigating "just cause"

darkside4k
12-01-17, 01:51
I actually haven't Google'd much about it at all. From what you've read, is pain / fatigue really a common pre-cursor symptom of ALS? The few stories I have seen haven't really seemed to mention or emphasize pain or fatigue.

Hancock
12-01-17, 02:17
No, it's not a precursor or symptom. Pain can come due to frozen joints and bed sores after full paralysis takes place, but pain is not a precursor symptom. Fatigue isn't a precursor symptom as it is usually accompanied by weakness. Like you would already be clinically weak and fatigued due to that if you had als. Fatigue can come from anxiety, muscle tension, chronic fatigue syndrome, fibromyalgia and plenty of other annoying but harmless things. I've read a lot of stories, trust me when I say a lot (like to the point where I've just sat and cried because a disease like this even exists) and no story has mentioned fatigue or pain as an initial symptom. One has mentioned tingling a few weeks prior to onset of clinical weakness, but that was an older woman in her 50s. Twitching prior to weakness can occur but rarely.

AntsyVee
12-01-17, 02:36
Nurse: it always sucks when your rational mind can't beat out the irrational one.

Vee: you serious?! I didn't know any of that. I know he was bugging people on the als forum as well, that's so unbelievabley disrespectful and horrid. He's going to get what's coming to him, that's for sure.

Yeah, apparently he told many people his personal information such as full name, birth date and residence. It was easy for members of AZ and the ALS forum to look him up because he kept nothing personal. They found out he was lying about his service, and the picture he had of the marines was one he found on Google.

I do believe he has psychological illness, but not HA as we all thought. It seems he testified in a murder trial because he found the body of the murder victim. I think (and I'm not a psych) that he probably has a personality disorder.

Hancock
12-01-17, 03:19
Yeah, apparently he told many people his personal information such as full name, birth date and residence. It was easy for members of AZ and the ALS forum to look him up because he kept nothing personal. They found out he was lying about his service, and the picture he had of the marines was one he found on Google.

I do believe he has psychological illness, but not HA as we all thought. It seems he testified in a murder trial because he found the body of the murder victim. I think (and I'm not a psych) that he probably has a personality disorder.



That's probably one of the crazier things I've heard on forums like this. Holy crap. So he got blown out from both ends. Could be complete depersonalizations, or he could have just been psychotic/suffered from psychosis. Although I don't get the whole preoccupation with als and HA if he wasn't actually fearful of it. Unless he really just was a major troll and that's all. That's still so strange.

andysa
12-01-17, 03:41
Oh me oh my the dreaded ALS rabbit hole, I have been down this particular little warren for about 8 months now, myself. A few things that have helped me, (some of which have been already posted ):

1. This is a rare disorder, there are far greater things to worry about in life than this.
2. No amount of worrying is ever going to change things, so you are just wasting your time.
3. People that actually have ALS are usually in far better mental state than people that fear having ALS
4. Twitching by itself means nothing, it is the company that twitching keeps which makes it suspicious
5. Self testing is a mugs game you will only end up hurting yourself and then thinking you have confirmed your suspicions.
6. FEAR Is not actually real it is our brains interpretation of a possible future reality constructed using a few random variables. In a different way, think of it as fantasizing about your life after you have won the lottery the only thing that stands in your way of that fantasy is picking 6 numbers or the actual odds 1 in 13,983,816 F.E.A.R= False Evidence Appearing Real

AntsyVee
12-01-17, 03:41
That's probably one of the crazier things I've heard on forums like this. Holy crap. So he got blown out from both ends. Could be complete depersonalizations, or he could have just been psychotic/suffered from psychosis. Although I don't get the whole preoccupation with als and HA if he wasn't actually fearful of it. Unless he really just was a major troll and that's all. That's still so strange.

I personally think he has histrionic personality disorder. I met a parent once who had that. I didn't really understand what it was really like until I met someone with it; it's so rare. But when I look it up online, it screams Stroud to me.

https://www.psychologytoday.com/conditions/histrionic-personality-disorder

Josh1234
12-01-17, 05:00
Stroud's last post was him saying he was diagnosed with respiratory onset ALS, then he disappeared and never came back.

Iker20
12-01-17, 05:57
Ive heard about him in the ALS forums, brandon stroud I believe, people would use to complain about him a lot in there, seems he definetly was in a really bad place to get to the point of bugging people in the als forums, didnt know he posted in anxietyzone too, goes to show how much health anxiety can affect you

Hancock
12-01-17, 08:18
Antsy, that seems very likely. The diagnosis fits pretty well.

Josh, was that ever confirmed or did he really, actually lie about the whole ordeal?

Iker, yes health anxiety is a beast and a half. Although in his case it's not clear what was going on in his mind. If he confirmed respiratory onset, but was caught lying all over Facebook, I doubt that was the end result. Although I suppose anything is possible.

---------- Post added at 07:18 ---------- Previous post was at 07:06 ----------


Oh me oh my the dreaded ALS rabbit hole, I have been down this particular little warren for about 8 months now, myself. A few things that have helped me, (some of which have been already posted ):

1. This is a rare disorder, there are far greater things to worry about in life than this.
2. No amount of worrying is ever going to change things, so you are just wasting your time.
3. People that actually have ALS are usually in far better mental state than people that fear having ALS
4. Twitching by itself means nothing, it is the company that twitching keeps which makes it suspicious
5. Self testing is a mugs game you will only end up hurting yourself and then thinking you have confirmed your suspicions.
6. FEAR Is not actually real it is our brains interpretation of a possible future reality constructed using a few random variables. In a different way, think of it as fantasizing about your life after you have won the lottery the only thing that stands in your way of that fantasy is picking 6 numbers or the actual odds 1 in 13,983,816 F.E.A.R= False Evidence Appearing Real


I completely agree with all your points. Something so rare, especially for young people, should be completely off our maps as there's an infinite amount of possibilities as to why we have odd symptoms, namely being anxiety as we're all a collective group on here. And you're completely right, that's one of the things that snapped me out of the fear originally, I just thought one day: "and what if I actually had it? Would I spend the rest of my able days worrying myself to death or would I be enjoying what I have until I don't anymore? The fear became relatively invalid at that point.

Honestly it's a shame. From the stories I've read, even in younger onset cases, everyone is so calm and collected. They realize and accept their mortality and situation, they understand what's going to happen and they have decisions to make (either let the disease run its course and peacefully leave when it's time or fight it in artificial-life preserving means). Reading those stories made me fearful but at the same time made me feel guilty. If these people could still laugh, smile, and try to enjoy life daily regardless of how far in the progression they are, what in the worlds name is my excuse?

Hah! That's why people constantly say you have better odds at winning the lottery than getting hit with this specific disease. It's crazy, normal people fantasize about winning the lottery and what they would do with the money. We fantasize about what would happen if we got some incredibly rare disease and how we would handle it/live with it/die with it. One of my good friends (who suffers from anxiety, OCD, and ptsd) and is much older than me told me today that if I value the rational so much, then why don't I objectively look at the cold hard facts and keep saying to myself: science over fear. I value science. I value analytics and statistics. I value data. But then when I'm faced with something like this, I completely lose it. I begin to stop differentiating reality and fantasy, same with all of us really. We start imagining that our bodies our sick, and more and more symptoms come to play with us. HA is the complete inability to understand that bodies do weird things and 99% of the time it's not sinister.

My old professor once told me (an anatomy prof) that it's a miracle our bodies even function as well as they do in the first place with how complex they are.

Mommyof2boys
27-01-17, 17:41
I am in about week 3 of this terrifying roller coaster. I have even posted a thread on the ALS forum (amazing, brave people there). I have an appointment on Feb 6 with a doctor to see if I can alleviate my fears or confirm anything.
I've had health anxiety since I can remember. When I was 15 I spent weeks not eating or sleeping because I thought I had ms. Turned out to be carpal tunnel syndrome. Still freaked about it for weeks after diagnosis
Now I've had leg twitches since October but I ignored them until around New year's, after all the holidays were out of the way and my oldest son's holiday vacation from school gave me more time to think.
I could write a book on my symptoms and it seems new ones rise DAILY.
My grandmother had it in the 80s. She had 8 children. Who all have had children. Who have all had children. No one else in the family ever had it. Her case was termed sporadic after genetic testing.
But still.
I have weakness and cramping in my legs but I am always doing balance/a trendy tests DAILY all day. It could be because of this right?
What if it's not though?
I'm young 26.
But not THAT young.
I am literally losing my mind. I finally got some sleep last night after about 3 days of literally not sleeping or eating AT ALL. I have neglected my fiance and my son's. I have read every single post on the als forum. Now I am here and it is not alleviating my fears.
All year last year I was obsessed about a heart flutter that I got constantly. There was a period of time that I had flutters ALL DAY EVERY DAY. It finally tapered off and almost immediately my legs began to twitch and have yet to stop. It is in my back, arms, neck, and face now. My tongue has a little bit too (didn't even know to test that till I read about it).
I am praying and hoping that this is still just my health anxiety and that this isn't the real thing (what I always say every time a health problem creeps up).

Nzxt27
27-01-17, 17:54
I twitch everyday too from hands, feet, fingers sometimes, back, sides, shoulders, legs, buttocks area. My legs feel weird sometimes. Mike all started in my left calf about two weeks after I ended up in ER with chest pains that was said I had GAD.

I feel I have restless leg syndrome now for past couple weeks. Anyone else getting all this?

Fishmanpa
27-01-17, 18:03
I have even posted a thread on the ALS forum

Please, please do not post on that forum! Yes, those people are amazing and brave and it's very disrespectful to be posting your unfounded fears there. You've had several responses telling you not to post and to get help with your anxiety. I highly suggest you heed their requests.

Positive thoughts

Mommyof2boys
27-01-17, 18:10
Fishmanpa, I have refrained. I do feel ashamed that I did but I really felt at the time it would help my fears. It's incredibly insensitive of me to do so, though. I see that now. I can only wait now to see a doctor and pray that all symptoms disappear or get better which doesn't happen with als. Hasn't been the case so far.

Nzxt27
28-01-17, 05:04
Do you guys get twitches or feelings like something is moving inside the leg or arms but can't see it moving on outside sometimes? It's almost like sometimes I can tell when my body part or parts are about to twitch before they do.

Josh1234
29-01-17, 05:26
Yes. Classic BFS stuff. Rumbling almost like an earthquake.

Nzxt27
29-01-17, 15:46
Yes. Classic BFS stuff. Rumbling almost like an earthquake.

Thanks josh for the reassurance. Gotta love our new bodies.