View Full Version : I am an idiot
I made the mistake over the weekend of reading a LOT of stories of how people's ALS began - including what they realised, in retrospect, were early signs. And contrary to what I've been reading on here, it does seem the onset can be remarkably subtle. Some twitched for *years* and it was their only symptom. One was even diagnosed with BFS initially. Another had only tongue twitching and very minor swallowing issues. Another had a deviated uvula (mine is deviated and one side of my palate doesn't raise as high).
Needless to say, I have freaked myself out even more. I can't see a doctor (none taking new patients and I can't drive). I am beside myself with fear. I now see atrophy in the thenar muscle of my left hand (the one that was twitching the other day). I also have pain in the area, which points away from ALS but the mind is powerful.
:wacko:I think my hypervigillence and body scanning is making me notice subtle symptoms that most people would overlook or ignore until the big ones kick in. And it's scaring the daylights of me.
MyNameIsTerry
07-08-17, 16:01
Some things to consider:
I made the mistake over the weekend of reading a LOT of stories of how people's ALS began - including what they realised, in retrospect, were early signs. And contrary to what I've been reading on here, it does seem the onset can be remarkably subtle. Some twitched for *years* and it was their only symptom. One was even diagnosed with BFS initially.
What is subtle to a HAer scanning their body for every "possible" perceived unusual thing is a lot different to a non HAer who couldn't care less.
For instance:
1) I've had a lump come up under my arms for months. What would a HAer be thinking of and how would they be behaving? Guess what, I couldn't care less.
2) I noticed a hard bone-like area protruding in my chest. It had been there for a couple of years. What would a HAer be thinking of and how would they be behaving? Guess what, I couldn't care less.
3) I've had many bad throats, benign meaningless symptoms of viruses as well as anxiety itself, months of daily headaches & brain fogs as well as memory issues & cognitive impairment. What would a HAer be thinking of and how would they be behaving? Guess what, I couldn't care less. (I should add, the anxiety symptoms do get to me as my GAD has been focussed on hating how they feel but I've never had the issues with is it something more").
In the case of some of these, I may have thought about it i.e. had concerns. But concerns are normal, worry is not (well you know what I mean)
4) My mum has had on ongoing cough for months over several years. She also has had difficulty with energy walking. Her response to the former was not to care for months and then see a GP because it shouldn't be there BUT not once did she think cancer, unlike what the stupid national advertisig campaigns try to imply. For the latter it was hindering her qualty if life and she saw a GP quicker, and they helped with this with meds as it was due to other meds for BP.
5) My dad had a lump in his throat for years. He assumed it was just the old man's neck that some get. It turned out to be a cyst. He wasn't concerned in the slighest until his GP raised it as an issue and wanted to rule out the obvious worry...and the consultant took one look and said it was a cyst.
I could go on with examples of the no anxious in my family.
The point is, what a HAer sees and panics about on a daily basis is what a non HAer sees and just switches the TV on and forgets about it.
Another had only tongue twitching and very minor swallowing issues. Another had a deviated uvula (mine is deviated and one side of my palate doesn't raise as high).
How do you know? Has a trained professional stated you have?
Needless to say, I have freaked myself out even more. I can't see a doctor (none taking new patients and I can't drive). I am beside myself with fear. I now see atrophy in the thenar muscle of my left hand
How do you know? Has a trained professional stated you have?
(the one that was twitching the other day). I also have pain in the area, which points away from ALS but the mind is powerful.
:wacko:I think my hypervigillence and body scanning is making me notice subtle symptoms that most people would overlook or ignore until the big ones kick in.
Like you just said, most people wouldn't care.
Reading about the rarer stuff is not a good idea for a HAer, you won't remain objective because of your Cognitive Distortions.
My mum baffled her GP for some months before waiting forever for a referral to a dermatologist. The derm took one look and got all excited because she had never seen one of these cases before and could use it for literature. It turned out to be a parasite from another country that "could" rarely occur in those who keep tropical fish. We kept them for years. I think it was a 1 in 10,000 case.
So, how many people go to see GP's, and even derms, about skin complaints each year?
My GF's mother was diagnosed with terminal lung cancer. The nurse said it was uncommon because it was the form expected in smokers. They tested her to see if it was genetic due to this, it wasn't. she had never smoked in her life.
How common would that be?
Shit happens. Some people are the unlucky ones. But guess what, and I bet every other member on here would agree with me here, I've never seen any HAer worrying about ALS/MND actually get diagnosed with it. But I've seen a hell of a lot of anxiety sufferers have it ruled out and be told it's their HA. :winks: Statistically, which do you think you are likely to be? Of course, there is always the rare people but aren't the chances well in your favour?
Yep, the chances are in my favour. That's one of the factors I use to self-soothe when my anxiety is peaking. Better than necking a bottle of red wine, I guess ...
I don't know how long my uvula and soft palate have been that way. I do know that it's only since reading about its involvement in ALS that it's freaked me out ...
I do know that it's only since reading about its involvement in ALS that it's freaked me out ...
That's your answer. That's how you know nothing is wrong.
Let me clarify. I didn't know my uvula was deviated until I checked. It could have been like that for some time, or it could have just happened. I don't know.
Curiously, my thumb, though sore, didn't start twitching until I read about the thenar muscle often being first hit. I find it hard to believe my brain could *make* it twitch though ...
Nothing you have said either here or before seems indicative of a medical problem. For those of us who have "been there, done that" with anxiety, we can tell it's your brain making the "issues" occur. The brain is very powerful, and when anxiety hijacks it, it becomes even more powerful because you're tapping into your flight/fight responses. Anxiety causes your worst fears to seem to be possible, whether you're afraid that a loved one not picking up the phone means they were horrible injured or whether you're afraid a headache means a brain tumor.
MyNameIsTerry
07-08-17, 19:55
Let me clarify. I didn't know my uvula was deviated until I checked. It could have been like that for some time, or it could have just happened. I don't know.
Curiously, my thumb, though sore, didn't start twitching until I read about the thenar muscle often being first hit. I find it hard to believe my brain could *make* it twitch though ...
But is it? Did you see Mpeckish post a picture of his tongue and all of us seeing nothing different to our own? How about the lady posting pictures of her hands saying she has Terry's Nails when her hands looked like anyone else's hands?
Many a person on here has seen how thinking their leg is twitching has resulted in twitching.
You mentioned muscle atrophy. Who other than a medical professional is able to work that one out? Remember it's not just following online medical tests, it's knowing about the many other possibilities and the tolerances e.g. people panic over their vitamin deficencies yet a doctor sees they are still higher than a red line.
Vee will find this interesting. In the WHO diagnostic manual they have Body Dismorphic Disorder (BDD) away from OCD. They place it in the Somatoform Disorders section instead. That allows for perceived incorrectly performing bodily functions to be captured. OCD & BDD have a comorbidity, so whether this classification or the US ASA OCD Spectrum one is more accurate (or perhaps a bit of both?) remains for them to debate & clarify, but it does strike me that this misperception can be seen in a fair few HAers on here. Not all, but some.
Melfish, if you can take on board this information and help without replying with a "yes but.." then you will be making progress into understanding your HA.
I can tell it's deviated because I can SEE that it leans to the left at almost a 45-degree angle, both at rest and when I say ahhhhh. But apparently uvula deviation can be found in healthy people too.
https://www.ncbi.nlm.nih.gov/pubmed/19294890
---------- Post added at 12:08 ---------- Previous post was at 12:06 ----------
Pulisa, ooops :doh:
Vee will find this interesting. In the WHO diagnostic manual they have Body Dismorphic Disorder (BDD) away from OCD. They place it in the Somatoform Disorders section instead. That allows for perceived incorrectly performing bodily functions to be captured. OCD & BDD have a comorbidity, so whether this classification or the US ASA OCD Spectrum one is more accurate (or perhaps a bit of both?) remains for them to debate & clarify, but it does strike me that this misperception can be seen in a fair few HAers on here. Not all, but some
LOL! You know me well! We have BDD here too. Usually it's diagnosed in many people who also have an eating disorder. As for HA, it's another chicken or the egg thing...does the BDD cause the HA or does the HA eventually develop into BDD? Psychs here usually diagnose you with whatever they think you had first.
Melfish, first off I'm sorry if I'm posting a lot in your threads but I really don't want you to go through the nonsense I went through for years.
Everything you described is nothing but hyper-awernes/bodyscaning/confirmation bias.
Yes of course there are cases of people getting diagnosis because they had only twitching or only slight swallowing problems but you know how the vast majority are diagnosed ?
Couldn't lift a cup of tea
Tripped multiple times going up one flight of stairs.
Things like that....
I also thought I had dents in my thenar or a dent in my foot or in my tongue, there isn't a single mirror in my house I have not fogged up by looking at my tongue.
Listen to the people around here, I know it's hard to believe what anyone is saying when you're in a situation like this but you will get through this
Thanks, Zomboy, and don't ever apologise for posting! I know you get it, and your experience with this is so helpful to me. At the moment, I am stuck up on the objective physical stuff - the deviated uvula (along with asymmetrical soft palate) and the deviated tongue tip especially. The twitches continue, though I am not allowing myself to look in my mouth - which of course just stresses me out because I'm imaging what's going on in there. I am also having swallowing and speaking issues, but that could be anxiety-related.
I want nothing more than for this to be anxiety, but everything just lines up with bulbar ALS and it terrifies me, mostly because I can't stand the thought of being a burden. And now that I've read that the onset can be subtle and slow ... well, you can imagine :(
I have a asymmetrical tongue, left side is bulkier and it's seen clearly if I look at it, but you know what... It's still working, it does everything I ask it to do.
And that's the thing you should always remember, it's about failing not feeling.
Why care if your uvula is deviated as long as it works.
If you ask anyone if they have any asymmetries ( please don't, unless you want people to look at you like you're a ghost) they won't even notice these kind of things.
If you're worried about bulbar, go chug a glass of water, if you didn't have any problems you're in the clear :)
Youre not alone. Ive had this same fear for 10 months and its getting worse. I just wanna do nothing and cry sometimes. My whole body feels like its shutting down.
Challenge accepted, Zomboy. I just successfully chugged a glass of water :yesyes:
Baz, is it the fear that's getting worse, or your symptoms?
Both. I have a feeling the fear is making symptoms worse though.
MyNameIsTerry
08-08-17, 02:18
LOL! You know me well! We have BDD here too. Usually it's diagnosed in many people who also have an eating disorder. As for HA, it's another chicken or the egg thing...does the BDD cause the HA or does the HA eventually develop into BDD? Psychs here usually diagnose you with whatever they think you had first.
OCD & BDD have connections and OCD UK cover both areas so they must be convinced (they meet with some well known OCD specialists in the NHS). There is also the % of children with BDD who's parents have OCD....but we would be back into the lack of causation argument there as it's statistical work rather than root cause.
So, with the DSM you get that spectrum where I would imagine they would see people with multiple disorders and it's easier to add them given the simliar underlying cycles. I know they have also moved the hair pulling/skin picking in that spectrum to go with OCD as they view it as so similiar whereas WHO disorder and believe it to still be an impulse disorder (they need locking in a room and not let out until they all agree!!!).
It makes sense, considering the DSM, that they can be found together and have some overlaps.
When you consider the ICD, it's lumped in with hypochondria style disorders but the wording of these somatoform disorders shows it's about believing a bodily function is not working in the case of some of them.
Whatever it is and wherever it goes in a book, it does seem interesting because I can think of elements of BDD in myself. I've known othe OCDers with the same but it's just not enough to warrant BDD as a diagnosis. With the HAers I think perhaps it manifests more like Mpeckish who believed he was seeing his tongue moving incorrectly even though we saw his video and it looked normal.
It's the same here, unless something additional really warrants it, they stick with the primary diagnosis. WHO explain when to add and when to merge too as in some cases there are "mixed" disorders.
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I have a asymmetrical tongue, left side is bulkier and it's seen clearly if I look at it, but you know what... It's still working, it does everything I ask it to do.
And that's the thing you should always remember, it's about failing not feeling.
Why care if your uvula is deviated as long as it works.
If you ask anyone if they have any asymmetries ( please don't, unless you want people to look at you like you're a ghost) they won't even notice these kind of things.
If you're worried about bulbar, go chug a glass of water, if you didn't have any problems you're in the clear :)
Hi Zomboy,
Is tongue asymmetry similiar to the rest on the body? Obviously we get posters worrying about other areas of the body so I was wonderng if maybe it's just lesser known with the tongue?
Melfish, now, do you think you could chug thin liquids like that if you had problems with your mouth/throat muscles...:)
Hey Terry, yes it's basically one side having hypertrophy from chewing and pushing food around, extremely common but only noticed by people with HA :whistles:
Both. I have a feeling the fear is making symptoms worse though.
Yeah, this is the case with 99.9% of the people on here. If they actually had something physically wrong with them, they wouldn't be on this site. It's just getting through the brain farts from HA that tell them it's something physical, not mental.
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OCD & BDD have connections and OCD UK cover both areas so they must be convinced (they meet with some well known OCD specialists in the NHS). There is also the % of children with BDD who's parents have OCD....but we would be back into the lack of causation argument there as it's statistical work rather than root cause.
So, with the DSM you get that spectrum where I would imagine they would see people with multiple disorders and it's easier to add them given the simliar underlying cycles. I know they have also moved the hair pulling/skin picking in that spectrum to go with OCD as they view it as so similiar whereas WHO disorder and believe it to still be an impulse disorder (they need locking in a room and not let out until they all agree!!!).
It makes sense, considering the DSM, that they can be found together and have some overlaps.
When you consider the ICD, it's lumped in with hypochondria style disorders but the wording of these somatoform disorders shows it's about believing a bodily function is not working in the case of some of them.
Whatever it is and wherever it goes in a book, it does seem interesting because I can think of elements of BDD in myself. I've known othe OCDers with the same but it's just not enough to warrant BDD as a diagnosis. With the HAers I think perhaps it manifests more like Mpeckish who believed he was seeing his tongue moving incorrectly even though we saw his video and it looked normal.
It's the same here, unless something additional really warrants it, they stick with the primary diagnosis. WHO explain when to add and when to merge too as in some cases there are "mixed" disorders.
Yeah, it's tough. The psychs don't have it easy. So many conditions overlap and are related. For instance, I've never been diagnosed with OCD. I didn't even realize what it was until college. I had always been diagnosed with GAD, depression and a sleep disorder when growing up. Yet when I was a kid I had rituals that I did to assuage my anxiety. I remember doing them as early as age 5.
MyNameIsTerry
08-08-17, 05:07
Melfish, now, do you think you could chug thin liquids like that if you had problems with your mouth/throat muscles...:)
Hey Terry, yes it's basically one side having hypertrophy from chewing and pushing food around, extremely common but only noticed by people with HA :whistles:
Thanks Zomboy,
That makes sense just like any prioritisation of one muscle over another would do that.
---------- Post added at 05:02 ---------- Previous post was at 05:01 ----------
Challenge accepted, Zomboy. I just successfully chugged a glass of water :yesyes:
Baz, is it the fear that's getting worse, or your symptoms?
Next challenge - arm wrestling! :yesyes:
---------- Post added at 05:07 ---------- Previous post was at 05:02 ----------
Yeah, it's tough. The psychs don't have it easy. So many conditions overlap and are related. For instance, I've never been diagnosed with OCD. I didn't even realize what it was until college. I had always been diagnosed with GAD, depression and a sleep disorder when growing up. Yet when I was a kid I had rituals that I did to assuage my anxiety. I remember doing them as early as age 5.
My GP still have me down as purely GAD. The therapisy he referred me to spotted it in the first session.
They say many children show OCD traits yet grow out of them. I can remember doing rituals with pen tops and light switches but it never came to anything and went away.
Remember when I said about my med causing my OCD? I look at it as an activation of an issue that was underneath somewhere because it took my anxiety levels way up over anything I had experienced. And then so much of anxiety is also behavioural so many months of high anxiety performing all these OCD cycles and I'm then in the thick of it.
I had no clue about OCD until I had it. I knew little about anxiety in general. Reading about it helped me make sense of it and know I wasn't going mad.
I had no idea it could be so diverse as our media just portray the cleaners, checkers & hoarders. Rarely is there a programme that goes beyond those groups. In fact, one of our big OCD programmes has been swerved by one of the leading OCD specialists over here more than once when they've asked him to appear and he & OCD UK have even written to complain about the programme.
Thanks Zomboy,
My GP still have me down as purely GAD. The therapisy he referred me to spotted it in the first session.
They say many children show OCD traits yet grow out of them. I can remember doing rituals with pen tops and light switches but it never came to anything and went away.
Remember when I said about my med causing my OCD? I look at it as an activation of an issue that was underneath somewhere because it took my anxiety levels way up over anything I had experienced. And then so much of anxiety is also behavioural so many months of high anxiety performing all these OCD cycles and I'm then in the thick of it.
I had no clue about OCD until I had it. I knew little about anxiety in general. Reading about it helped me make sense of it and know I wasn't going mad.
I had no idea it could be so diverse as our media just portray the cleaners, checkers & hoarders. Rarely is there a programme that goes beyond those groups. In fact, one of our big OCD programmes has been swerved by one of the leading OCD specialists over here more than once when they've asked him to appear and he & OCD UK have even written to complain about the programme.
Yes, I was one of the ones who grew out of the rituals. It turned from being anxious about certain things to being anxious about everything. LOL Thus the GAD diagnosis. And of course it alternated with depression, which is common for many of us. I'm just glad I'm not a schizoaffective like my mom.
As I've told a few people on here, one of my former roommates from college has OCD. One morning I woke up to her taping the kitchen drawers shut so that she couldn't get to the knives and accidentally kill our other roommates and I by mistake. We took her into our university health center and that's where we learned about OCD. Luckily they had a great program where they educated us and her family. Because of that, it's really easy for me to see the OCD in others.
The public is very ignorant of mental illness in general...as you've seen by the number of people on here who think they have schizophrenia, when most of them don't really have an idea of what it is. There was that one guy who thought it was multiple personalities, remember?
I feel though that at least in the UK, there is more of an awareness. At least you have some programs about it. The most that we've had are on psychopath serial killers which are like 1% or less of the population. And I noticed that the younger members of your royal family was promoting mental health. Also with your national health care, there is much more access to help (although it may not liked by everyone) than there is here. Usually mental health only comes with private insurance here.
Hey, quit hijacking my thread like a South Korean spambot :roflmao:
MyNameIsTerry
08-08-17, 16:40
Join my super slots casino and get 10% back if you hold my plums :winks::yesyes:
Hey, quit hijacking my thread like a South Korean spambot :roflmao:
Lol we're tired of hearing about your damn uvula ;)
Oh, and I think those were North Koreans...the first time they'd ever gotten to use the Internet and all;)
Lol we're tired of hearing about your damn uvula ;)
Ha! Then hold on to your hats for my epiglottal woes ...
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(seriously, though, does *your* uvula hang straight down?)
In MY experience the thing that got me to worry less about those stories were the fact that THEY didn't see the right doctors. THEY didn't get EMGs done. They didn't blah blah blah. I did get those things done and if they did too something would have showed up
I wonder, though, how many of those "early symptoms" were actually early symptoms, or just things that were happening to them that had nothing to do with their eventual ALS diagnosis at all.
This isn't totally related, but I went through a course of Accutane that sent me into the rabbit hole of internet forums dedicated to people who had incredibly severe reactions to the drug - many continuing years later. I'd have long, worry filled conversations with my therapist about this, and eventually I listed to what she'd been trying to point out to me: these people are **claiming** that this drug caused this reaction. None of them were health professionals. None of them had been told by a doctor that the drug was the cause of this - in fact, many had been told the opposite. X was happening and they chose to blame Y, without any proof whatsoever.
So it's possible that Joe Schmoe had a twitch for awhile, maybe anxiety related, maybe not, then later down developed ALS and remembered that twitch he had years ago. Again, maybe related, maybe not.
Ah, you've both made good points.
Vincy, you've been down the rabbit hole and done your fair share of research. Do you happen to know whether bulbar is a more aggressive form of ALS? I mean, does it progress rapidly? Would I have significant progression after 12 weeks? Also, does it tend to hit older than limb onset?
I agree that most of those "early symptoms" were probably just coincidences. And if if they were actual symptoms, they would undoubtedly be followed by very severe symptoms in a short amount of time.
ALS is a disease that causes paralysis and often kills with a year to two years. The average is 3 years. It is not a subtle disease.
You have got to stop researching. It is only doing harm. You are only going to confuse and scare yourself.
Best of luck
What worries me is that all the things I am noticing through my hypervigillance are the beginnings, and that severe symptoms will follow. When people say the onset is abrupt and ruthless, perhaps it is because they did not notice the preceding subtle signs
MyNameIsTerry
09-08-17, 01:55
I agree with the above good points. Think of it this way, why do you only hear these things on the internet and not from specialists? If you went to a specialist with a rarity or proof of something new in any disease or disorder do doctors think "meh, shit happens" or are they excited at the prospect of writing in The Lancet, Nature or other worldwide medical journal to make themselves more important? Does a surgeon love the chance to perform some groundbreaking surgery and let the world know about it?
So, why don't we have medically documented cases?
It reminds me of a story posted on here from a cancer board. Some poor guy had an oral cancer advanced enough to need surgery to remove a section of his tongue. He was given ongoing care afterwards and a good prognosis. What happens? Years later he has the same cancer again. His brother documented all this and said he had symptoms coming & going for years. But when you read the case it was clear that the patient had not maintained good oral health, despite his earlier advanced oral cancer. He had symptoms that are seen in poor dental hygiene. So, did he really still have the cancer, as his brother alleged, or did he have unconnected symptoms to due to poor dental health and his oral cancer returning was unconnected? The doctors had not diagnosed the return of his oral cancer until later despite all these symptoms for I think it was 2 years (something like that). Oral cancer is aggresive. And do you think any doctor is going to take a chance with a patient who had surgery to remove a section of tongue for oral cancer? No chance, he would be coming his bum with tests straight away.
What I believe, like mentioned above, is that it's Hindsight Bias. In the case of the brother, the doctors hadn't stated it had lingered for two years without advancing due to it's inevitable conclusion because he wasn't having any treatment for cancer. Wouldn't a doctor want to document a case of such a rare patient who seemingly held off an aggresive cancer for years without treatment? Wouldn't that be one that would be hitting the news?
And what about the trolls & fakes?
---------- Post added at 01:55 ---------- Previous post was at 01:54 ----------
What worries me is that all the things I am noticing through my hypervigillance are the beginnings, and that severe symptoms will follow. When people say the onset is abrupt and ruthless, perhaps it is because they did not notice the preceding subtle signs
But how long have you been having your perceived signs now?
12 weeks today (but who's counting?)
Eh, why bother counting? The North Koreans apparently have a missile now...and we blocked all of their spamming! :doh:
I know right? A little uvular deviation is no match for an intercontinental ballistic missile
MyNameIsTerry
09-08-17, 04:32
Missile deviation.
A NK leader's worse nightmare...but it happens to all men at some point...not being able to get it up. :winks:
Yeah, well lets just hope he doesn't have any Viagra for his missiles :unsure:
1) Bulbar generally has a shorter prognosis because it affects the ability to eat and tends to affect respiratory system faster than limb onset. It is also more obvious and "worse" because instead of "cant button up shirt" or "cant turn door handle" as the first progressive problems its "cant speak properly" and "cant swallow"
mean age of onset is a few years later for bulbar than limb, increasing in frequency with age.
below 40 approx only 9% of cases are bulbar, up to mid-30s for older ages. quite a bit more common in women than men
it is very very obvious. most accounts i've read about bulbar have said they woke up one morning with a slur, instantly noticeable to their wives/coworkers or whoever it may be. those videos I linked you are a very TYPICAL presentation. 3 'months in itd likely be to the point that people are STRUGGLING to understand you. not sometimes...when you trip up on your words due to anxiety like I have...but ALWAYS because you cant speak
Thanks, as always, Vincy. I'm really struggling with this. I just can't seem to entertain the idea it's anxiety. Well, not for long. I'm a worrier by nature, so of course I'd worry about symptoms of a deadly disease. Duh. Which makes me think maybe it's not even health anxiety, it's just regular anxiety focused on what's happening to my body. I don't even know anymore.
In March of this year I was drinking wine in Paris and the Loire Valley with not a care in the world. It was so nice to wake up at ease and not have to deal with the overwhelming dread and the checking and the fear. I took that for granted, and now I doubt I'll ever have that peace again *plays tiny violin*
MyNameIsTerry
09-08-17, 16:12
Violins playing whilst sipping wine in the Loire Valley sounds amazing!!! :yesyes:
People worrying about something they have tend to be different to what you see on here. They are busy getting on with it, many are busy living as much as they are allowed to.
Mental health issues have a comorbidity with life limiing diease/disorder but you would expect anxiety & depression under such pressures. However, that comes later than th actual diagnosis and these people are pushing for treatment rather than worrying about "could it be" because they know it already is and without action they can't help themselves. They don't get stuck in the pre-treatment loop of anxiety so much but HAers do.
Cognitive Distortions. Negative thinking. "I can't get bettervthan how I am now". Been there, done that, got a lot better and looked back to see how wrong my thinking was. A few years back I was a quivering wreck 24/7 sitting on the settee all day afraid to even eat or wash. I spent the best part of a couple of years doing the same compulsions day in day out and it owned my life. I thought I was cursed forever. But then you escape the loops and things improve and you know then that it was skewed thinking.
MyNameIsTerry
09-08-17, 16:14
Violins playing whilst sipping wine in the Loire Valley sounds amazing!!! :yesyes:
People worrying about something they have tend to be different to what you see on here. They are busy getting on with it, many are busy living as much as they are allowed to.
Mental health issues have a comorbidity with life limiing diease/disorder but you would expect anxiety & depression under such pressures. However, that comes later than th actual diagnosis and these people are pushing for treatment rather than worrying about "could it be" because they know it already is and without action they can't help themselves. They don't get stuck in the pre-treatment loop of anxiety so much but HAers do.
Cognitive Distortions. Negative thinking. "I can't get bettervthan how I am now". Been there, done that, got a lot better and looked back to see how wrong my thinking was. A few years back I was a quivering wreck 24/7 sitting on the settee all day afraid to even eat or wash. I spent the best part of a couple of years doing the same compulsions day in day out and it owned my life. I thought I was cursed forever. But then you escape the loops and things improve and you know then that it was skewed thinking.
The violin was for my pathetic pity party. An acccordion accompanied my Parisian wine quaffing. Do you know nothing?
But yes, cognitive distortion, confirmation bias. I may be guilty of these. Had I not had those tongue movements that led me to begin compulsively checking my mouth, I may never have noticed some of the other symptoms. Either that, or my fear is founded.
When I went to the ER because of the mother of all panic attacks triggered by the initial tongue thing, and told the old ER doctor my fear of a neurological disorder, he shrugged and said, "Well, either you've got one or you haven't." This is very true.
MyNameIsTerry
09-08-17, 20:25
ooohhh, how fancy, an accordian. :biggrin:
Nice bedside manner by that doctor, must have been a long shift.
Nice bedside manner by that doctor, must have been a long shift.
Well, obviously my HA brain was not going to leave that one alone. So I rephrased and said, "Are you aware of any neurological disease where tongue movements like this are a symptom?" So he pulled out his iPad and googled right there in front of me. Then he LIED to MY FACE and told me he had zero matches. I guess he just wanted me out of his emergency room :/
Of course I later googled myself and found a gazillion ALS hits and then I was down the rabbit hole, where I've remained ever since ...
Unfortunately, ER docs get many people having panic attacks. I've been one of them myself--three times and I'm not even a hypochondriac! I imagine it's hard for them to stay patient.
So he pulled out his iPad and googled right there in front of me. Then he LIED to MY FACE and told me he had zero matches. I guess he just wanted me out of his emergency room :/
Of course I later googled myself and found a gazillion ALS hits and then I was down the rabbit hole, where I've remained ever since ...
It actually makes total sense. The doctor doesn't sit around all day googling tongue twitches and ALS, you do. It makes total sense that your searches will be skewed heavily toward the links that YOU click on. When I search it, the first 6 results are about BFS and anxiety! Nothing about ALS. Dr. Google learns what you like to click on ;)
Positive thoughts and you don't have ALS.
MyNameIsTerry
10-08-17, 16:41
I always find it strange that doctors Google. Why they wouldn't be reaching for a medical database is beyond me. Didn't they used to use these things called books years ago? :winks: You wouldn't walk into a library for the public if you could walk into one just for doctors.
Capercrohnj
10-08-17, 17:33
I always find it strange that doctors Google. Why they wouldn't be reaching for a medical database is beyond me. Didn't they used to use these things called books years ago? :winks: You wouldn't walk into a library for the public if you could walk into one just for doctors.
Probably just trying to make a point.
Google is very useful if you do now how to use it (unlike how many HA sufferers use it) such as the skill of being able to get sources. Lots of peer reviewed scientific research can be found. Also legit medical association sites. I prefer Google Scholar as it doesn't have a lot of pseudoscience junk in it.
MyNameIsTerry
10-08-17, 18:30
Probably just trying to make a point.
Google is very useful if you do now how to use it (unlike how many HA sufferers use it) such as the skill of being able to get sources. Lots of peer reviewed scientific research can be found. Also legit medical association sites. I prefer Google Scholar as it doesn't have a lot of pseudoscience junk in it.
Agreed. I used to use it for research work for certain things. And I found it easier to use Google to search for pages within certain regulation sites as their own search facilities were pretty poor compared.
It's a big challenge for HAers to use information about their fears but in some way that's also part of getting beyond it all. If you can't become objective about your fears like the non anxious, you've got work still to do. but it's easy for me not being a HAer whn it comes to using information as no matter what list of nasty diseases crops up, I'm not drawn to them at the cost of also seeing the minor stuff that's also present on that page.
Yeah, but I find all sorts of scary stuff on PubMed and in peer-reviewed studies etc. It's not like I'm relying on Yahooo answers to fuel my HA. Before the internet, I'd go to the medical section of large bookstores and look up my symptoms in neurology textbooks during my lunch hour :/
Yeah, but I find all sorts of scary stuff on PubMed and in peer-reviewed studies etc. It's not like I'm relying on Yahooo answers to fuel my HA. Before the internet, I'd go to the medical section of large bookstores and look up my symptoms in neurology textbooks during my lunch hour :/
Damn, girl! Lol
You know, I wonder how North Korean hypochondriacs make it work. All they get when they Google is information on the "Dear Leader." Maybe that's why they keep spamming us.
Ha. Maybe they all develop narcissistic personality disorders?
In other news, just because I have a history of HA doesn't mean I'm not right this time. Even a broken clock ...
MyNameIsTerry
10-08-17, 20:43
Even pro studies can be pretty flawed. I've seen my share of BS studies or intentionally biased ones.
In NK the first question the doctor asks is "have you said anything against our leader?". If they answer yes, the doctor thinks their chances of having some lethal poisoning may not be quite so unfounded. :winks:
Yep. And the cure for all ailments is the gulag!
One Day in the Life of Melfish Denisovich
You're a girl. You'd be Melfish Denisnovna ;)
---------- Post added at 19:37 ---------- Previous post was at 19:36 ----------
Uh oh, your North Korean hypochondriac friends are back!
MyNameIsTerry
11-08-17, 04:37
Admin must have left the registrations on automatic thinking it was resolved.
You're a girl. You'd be Melfish Denisnovna ;)
I always bugger up the patronymics
And here I thought I'd never use my linguistics classes again!
ChildOfTheKing
11-08-17, 08:29
Some things to consider:
What is subtle to a HAer scanning their body for every "possible" perceived unusual thing is a lot different to a non HAer who couldn't care less.
For instance:
1) I've had a lump come up under my arms for months. What would a HAer be thinking of and how would they be behaving? Guess what, I couldn't care less.
2) I noticed a hard bone-like area protruding in my chest. It had been there for a couple of years. What would a HAer be thinking of and how would they be behaving? Guess what, I couldn't care less.
3) I've had many bad throats, benign meaningless symptoms of viruses as well as anxiety itself, months of daily headaches & brain fogs as well as memory issues & cognitive impairment. What would a HAer be thinking of and how would they be behaving? Guess what, I couldn't care less. (I should add, the anxiety symptoms do get to me as my GAD has been focussed on hating how they feel but I've never had the issues with is it something more").
In the case of some of these, I may have thought about it i.e. had concerns. But concerns are normal, worry is not (well you know what I mean)
4) My mum has had on ongoing cough for months over several years. She also has had difficulty with energy walking. Her response to the former was not to care for months and then see a GP because it shouldn't be there BUT not once did she think cancer, unlike what the stupid national advertisig campaigns try to imply. For the latter it was hindering her qualty if life and she saw a GP quicker, and they helped with this with meds as it was due to other meds for BP.
5) My dad had a lump in his throat for years. He assumed it was just the old man's neck that some get. It turned out to be a cyst. He wasn't concerned in the slighest until his GP raised it as an issue and wanted to rule out the obvious worry...and the consultant took one look and said it was a cyst.
I could go on with examples of the no anxious in my family.
The point is, what a HAer sees and panics about on a daily basis is what a non HAer sees and just switches the TV on and forgets about it.
How do you know? Has a trained professional stated you have?
How do you know? Has a trained professional stated you have?
(the one that was twitching the other day). I also have pain in the area, which points away from ALS but the mind is powerful.
Like you just said, most people wouldn't care.
Reading about the rarer stuff is not a good idea for a HAer, you won't remain objective because of your Cognitive Distortions.
My mum baffled her GP for some months before waiting forever for a referral to a dermatologist. The derm took one look and got all excited because she had never seen one of these cases before and could use it for literature. It turned out to be a parasite from another country that "could" rarely occur in those who keep tropical fish. We kept them for years. I think it was a 1 in 10,000 case.
So, how many people go to see GP's, and even derms, about skin complaints each year?
My GF's mother was diagnosed with terminal lung cancer. The nurse said it was uncommon because it was the form expected in smokers. They tested her to see if it was genetic due to this, it wasn't. she had never smoked in her life.
How common would that be?
Shit happens. Some people are the unlucky ones. But guess what, and I bet every other member on here would agree with me here, I've never seen any HAer worrying about ALS/MND actually get diagnosed with it. But I've seen a hell of a lot of anxiety sufferers have it ruled out and be told it's their HA. :winks: Statistically, which do you think you are likely to be? Of course, there is always the rare people but aren't the chances well in your favour?
Excellent post MNIT.
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