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View Full Version : Ughh!! Bulbar onset ALS!! Why???



AnxiousJamie
14-01-18, 23:45
Hey everyone. First of all, Iíve read all of the bulbar als topics on here to try to get some clarity before I posted. I have never been worried about ALS. Until now!! About 3 weeks ago I started realizing that through out the day I was yawning a lot, no matter how much I slept the night before. I began focusing on that and of course the yawning increased. I was thinking possible brain tumor until I read a research paper on yawning as presenting symptom of bulbar onset als.

Around the time I read that, I realized that I had had two days where I penetrated water while drinking. (The feeling of water going down the wrong pipe). This has happened at least once a day since then. Yesterday it happened 3 times. Iím starting to spiral thinking about the possibility that Iím losing swallow function. The bad part is that Iím a medical speech pathologist and I work on disordered swallows everyday. I completely understand the swallowing mechanism and know exactly what my issue is but I just do not know whatís cAusing it all of a sudden. Of course I think itís ALS. Please someone give me clarity. First the yawning and now the swallowing issue. Iíve read that als is failure not feeling. And I actually do think my swallow is failing.

axolotl
14-01-18, 23:51
You're worrying about a very rare version of a very rare disease. And I doubt people with this um and ah about whether their swallowing's failing... they can't swallow.

I have a book on HA, and not being able to swallow properly when you're thinking too hard about swallowing is literally an example in there.

What are you doing about your HA? I'm afraid posting on here for reassurance may temporarily get some logic in you but won't help you recover in the long term.


until I read a research paper on yawning as presenting symptom of bulbar onset als.

Are you a medical professional then? Because only a medical professional has a chance of understanding and assessing a medical research paper.

AnxiousJamie
15-01-18, 00:08
Thanks for your response. I am a medical professional and I do know how to read research. I have online access for peer reviewed articles that most people don’t have bc of my job. It’s a catch 22. I need to be able to have access to this research but sometimes it’s detrimental to my mental health.


I do see a psychiatrist and am medicated. I have been for years. I am also seeing a therapist and for the most part my anxiety is under control. But I have breakthrough anxiety every now and then. It’s teally so annoying. Thanks again for your response.

axolotl
15-01-18, 00:26
Sorry if the last bit sounded patronising, most people on the forum (including me!) have a habit of trying to decipher medical tomes far beyond their comprehension...

I'm probably teaching you to suck eggs a bit with that last post then... but just a note from a fellow recoverer that there are blips and relapses and we can get through them. But yes, it is really annoying.

AnxiousJamie
15-01-18, 00:33
You were not patronizing. I need tough love. I would love to be recovered. I have a habit of catastrophic thinking and it amazing me that after I get over a specific illness, it seems so silly. But right now, it seems very real to me. I honestly feel like I could have this.

jojo2316
15-01-18, 12:43
Do you think the problem is hyper attention? You started yawning, and that made you think of ALS, so you began noticing the act of swallowing..... something which happens best when NOT noticed! Having been in the same position with the same worry I know that what follows is awkward swallowing.

Carys
15-01-18, 13:48
I absolutely think it could be hyper attention and sensitivity to a particular action of the body, causing this.
For example, many people have trouble with breathing with anxiety, once they become aware of it and think they can't breath right....they feel like they are having to 'make themselves breathe' and forcing breathes and feeling breathless. This is an automatic body thing, breathing, and we aren't intended to become aware of it and over sensitised to it. Once they are asleep and not thinking about it, the breathing just continues as it should.

The same applies to swallowing. You don't usually think about it, your body just does it, BUTTTTTTttt if you are incredibly anxious and have a normal minor choking moment (you know a bit of water accidentally goes the wrong way) then you are hyper aware and vigilant. You try and bring swallowing under your physical and mental control, rather than allowing it to be automatic, and before you know it you are coughing and spluttering again.

Swallowing problems are of course part of ALS/MND for many people, BUT, they don't come on that quickly and there are other minor symptoms too which occur at a similar time not just related to the throat. I'm not going to tell you what they are, but you've not mentioned them in your posts. Unforunately, as you are involved in this research/medical field.....voila....your focus is even worse than the averaage person .

Fishmanpa
15-01-18, 13:56
Please read THIS. (http://www.nomorepanic.co.uk/showthread.php?t=196071) Especially the section on Bulbar onset.

Positive thoughts

Carys
15-01-18, 13:59
Good link. ANDddddddd.....yes......the bit about swallowing and the speech, mouth changes and so were the things I was referring to. My father has ALS and has done for 10 years, I watched him develop dyspahgia and there were subtle additional changes to 'water going down the wrong way'.

Catherine S
15-01-18, 14:11
I'm assuming...as this is your field of expertise...that you know the signs of ALS in your patients when examining them? Presumably you wouldn't refer too many of them for ALS assessments, since you as the medical professional would know the difference between something benign and something that would need further investigation. Can you not apply that to rationalise your own symptoms?

I'm often surprised by how many medical professionals there are here with health anxiety, is it that you're full of the knowledge of these diseases and exposed to all the bad stuff so much that your mind can play tricks? They say ignorance is bliss....I think they could be right!

melfish
15-01-18, 20:40
Good link. ANDddddddd.....yes......the bit about swallowing and the speech, mouth changes and so were the things I was referring to. My father has ALS and has done for 10 years, I watched him develop dyspahgia and there were subtle additional changes to 'water going down the wrong way'.

You used the word "subtle" twice. I thought ALS was anything BUT subtle. I am sorry your father has this awful disease.

Carys
15-01-18, 20:44
In its early stages yes the changes are very subtle. It doesn't just BAM hit you overnight, one day you can swallow the next you can't, one day you can move a leg , next day you can't. Put it this way....my father (who has had it for a decade now) knew about very small internal and physical changes well before we could physically see them. Some of those changes were as tiny as feeling a tiny piece of food kept getting stuck in a specific part of his mouth when chewing. This is what I refer to as subtle. Admittedly his form is very slow progressing (however he is totally locked in now), but the same applies to even faster progressing forms; there are very minor almost inperceivable changes at the start.

melfish
15-01-18, 20:51
Hmm, again, I'm sorry about your father, but that's not the most helpful thing to be writing on a HA board imho. How does this help the OP?

---------- Post added at 11:51 ---------- Previous post was at 11:50 ----------

It also contradicts everything I've read about ALS and the experiences of PALS and CALS on the ALS boards, who very much emphasise that changes are abrupt and dramatic. Perhaps you father's case was an exception.

Carys
15-01-18, 20:55
My father is fine, as am I, life goes on. Thanks for your comments though. It helps, I believe, because the OP simply doesn't have the things that would have occurred before the swallowing difficulties, the subtle changes I refer to. I amnot the only one to make note of those changes, a link was posted by another user further up with full ALS details. Those small changes that an ALS sufferer would have had in other parts of their face/mouth/speech and so on, by this point if swallowing was being affected, haven;t occurred. It is the lack of them, that means the OP has HA and not ALS.

If the OP had swallowing problems (dysphagia) to the extent that water was aspirating, then that would not be the only symptom they had, this is what I'm trying to explain. With respect... I think you could be making the OP more concerned by stating that they could still have ALS, and are slightly missing the point. I know lots of people with MND and know how symptoms have progressed, with bulbar progression slight and subtle tongue changes would be occurring, along with speech. The OP has not mentioned them, but they would have occurred if they already had dysphagia.

melfish
15-01-18, 21:11
Where did I state the OP could have ALS?

Josh1234
15-01-18, 21:15
In its early stages yes the changes are very subtle. It doesn't just BAM hit you overnight, one day you can swallow the next you can't, one day you can move a leg , next day you can't. Put it this way....my father (who has had it for a decade now) knew about very small internal and physical changes well before we could physically see them. Some of those changes were as tiny as feeling a tiny piece of food kept getting stuck in a specific part of his mouth when chewing. This is what I refer to as subtle. Admittedly his form is very slow progressing (however he is totally locked in now), but the same applies to even faster progressing forms; there are very minor almost inperceivable changes at the start.

This isn't true. Many people DO overnight have something stop working. It's a disease of the nerves, not the muscles, and everyone progresses differently.

Carys
15-01-18, 21:19
Sorry, but I honestly am very confused by this conversation. I and another person were simply pointing out that the OP doesn't have other symptoms, that they would have if they had dysphagia. It was an attempt at reassurance. There is a link detailing ALS symptoms by another poster, detailing exactly the same symptoms. You indicated that I wasn't being helpful in detailing those changes on here...but I figured I was as they don't HAVE THEM.

I thought by countering my statements, saying they werent helpful, adding that it could be dramatic and that you had read differently on the ALS boards...it could fuel the OP's fears. I think there is some sort of misunderstanding here, so shall we leave it at that?

---------- Post added at 20:19 ---------- Previous post was at 20:17 ----------

Rubbish Josh, sorry, I'm not getting into this anymore....no people do not 'overnight' have something stop working. Even if you had the quickest of all forms, it doesn't just go BAM a leg has stopped working the next day. It may be fast for some people (with the average being 3-5 years of duration) but it isnt so fast that one day you can swallow and one you can't ! I'm leaving this now, as I really don't see how this is at all helpful to anyone with HA.

melfish
15-01-18, 21:28
I've read FMP's thread multiple times and it is very helpful but shares little with your posts. By repeatedly stating how subtle and slight the symptoms are, you are instilling nothing but doubt in people who fear this disease. I know, because I am one of them.

Josh1234
15-01-18, 21:34
Sorry, but I honestly am very confused by this conversation. I and another person were simply pointing out that the OP doesn't have other symptoms, that they would have if they had dysphagia. It was an attempt at reassurance. There is a link detailing ALS symptoms by another poster, detailing exactly the same symptoms. You indicated that I wasn't being helpful in detailing those changes on here...but I figured I was as they don't HAVE THEM.

I thought by countering my statements, saying they werent helpful, adding that it could be dramatic and that you had read differently on the ALS boards...it could fuel the OP's fears. I think there is some sort of misunderstanding here, so shall we leave it at that?

---------- Post added at 20:19 ---------- Previous post was at 20:17 ----------

Rubbish Josh, sorry, I'm not getting into this anymore....no people do not 'overnight' have something stop working. Even if you had the quickest of all forms, it doesn't just go BAM a leg has stopped working the next day. It may be fast for some people (with the average being 3-5 years of duration) but it isnt so fast that one day you can swallow and one you can't ! I'm leaving this now, as I really don't see how this is at all helpful to anyone with HA.

This is just false, sorry. It can and does happen that way.

AntsyVee
15-01-18, 21:34
I think the point to recognize here is that WHILE some people have subtle decline, AND many people have rapid decline, ALS CAN ONLY BE DIAGNOSED BY A DOCTOR. And if yours says you don’t have it, YOU DONT HAVE IT.

Have a good day, everyone!

Vee

melfish
15-01-18, 21:40
I think I will take the word of the numerous PALS and CALS over one random person who seems to have come here to create fear with sweeping and untrue generalisations

AntsyVee
15-01-18, 21:44
Well, I’m still waiting for your ass to go to the doc, Mel :p. And then I’m gonna have a “Mel doesn’t have ALS” party in your honor so I have an excuse to have a drink.

melfish
15-01-18, 21:49
Well, Iím still waiting for your ass to go to the doc, Mel :p. And then Iím gonna have a ďMel doesnít have ALSĒ party in your honor so I have an excuse to have a drink.

I will join you!

Carys
15-01-18, 21:49
good grief, what a reception when I was simply making the point as was another poster, that he doesn't have the symptoms.

I've been on here for years trying to help people, and this...

'one random person who seems to have come here to create fear with sweeping and untrue generalisations'

...is a really nasty thing to say.

For the final time......I am saying that the changes (lets take out the word subtle as it seems to bother you) I refer to would happen BEFORE the lack of being able to swallow. There would not just be aspiration, that is the point, there would be other things, lots of other SMALL things (I've replaced that, instead of subtle). I realise you have your own fears of ALS, but the actuality of ALS is out there, the link from the other poster details it all! You seem to know all too well about ALS apparently, so will therefore know that recent research suggests that your tongue is an early indicator of bulbar onset. The OP doesn't have that.

Josh1234
15-01-18, 22:01
How about just offer support without making untrue medical statements? No one is saying anything other than what you said about PALS always having subtle signs first is wrong. Which it is.

Carys
15-01-18, 22:07
My statements are absolutely not untrure. ALS is called MND in the UK, here is a small portion from their literature...

Symptoms

Symptoms of motor neurone disease come on gradually and may not be obvious at first.
Early symptoms can include:


weakness in your ankle or leg – you might trip, or find it harder to climb stairs
slurred speech, which may develop into difficulty swallowing some foods
a weak grip – you might drop things, or find it hard to open jars or do up buttons
muscle cramps and twitches
weight loss – your arms or leg muscles may have become thinner over time
difficulty stopping yourself crying or laughing in inappropriate situations

Tests and diagnosis

It can be difficult to diagnose motor neurone disease in the early stages. There's no single test for it and several conditions cause similar symptoms.

ANd this from the ALS site...

The initial symptoms of ALS can be quite varied in different people. One person may have trouble grasping a pen or lifting a coffee cup, while another person may experience a change in vocal pitch when speaking. ALS is typically a disease that involves a gradual onset.
The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, 10 or more years. Symptoms can begin in the muscles that control speech and swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. However, progressive muscle weakness and paralysis are universally experienced.
Gradual onset, generally painless, progressive muscle weakness is the most common initial symptom in ALS. Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches, and/or uncontrollable periods of laughing or crying.


The OP says they have difficulty in swallowing foods BUT DO NOT HAVE slurred speech, which comes prior!!!! I have made no invalid medical statement at all, you yourself have however in saying that it can be sudden and dramatic.

I give up.

Catherine S
15-01-18, 22:17
My statements are absolutely not untrure. ALS is called MND in the UK, here is a small portion from their literature...

Symptoms

Symptoms of motor neurone disease come on gradually and may not be obvious at first.
Early symptoms can include:


weakness in your ankle or leg Ė you might trip, or find it harder to climb stairs
slurred speech, which may develop into difficulty swallowing some foods
a weak grip Ė you might drop things, or find it hard to open jars or do up buttons
muscle cramps and twitches
weight loss Ė your arms or leg muscles may have become thinner over time
difficulty stopping yourself crying or laughing in inappropriate situations

Tests and diagnosis

It can be difficult to diagnose motor neurone disease in the early stages. There's no single test for it and several conditions cause similar symptoms.

The OP says they have difficulty in swallowing foods BUT DO NOT HAVE slurred speech, which comes prior!!!!

I give up.

Looks like Dr. Google has been brought to us. Not sure that's very helpful. Jamie was really only telling us that he's aware it's more likely that his fears are probably anxiety-led, and was really only asking for help in dealing with that.

Carys
15-01-18, 22:36
I don't find it helpful that people entirely misread my posts and intention, with and make irrational and aggressive responses.

Please note, a link was posted on this thread that said EXACTLY what I too have stated in the same terms. This OP doesn't have the signs and symptoms of ALS, as listed on that link.

I will reply no further to this thread.

Fishmanpa
15-01-18, 22:46
ALS, like many other serious illnesses, can manifest itself differently in every case. For some it can be a gradual loss of function, for others more dramatic.

It really doesn't matter because the OP doesn't have it nor does anyone else fearing it that's posting here :lac:

Peace and out!

Positive thoughts

Catherine S
15-01-18, 22:54
I don't find it helpful that people entirely misread my posts and intention, with and make irrational and aggressive responses.

Please note, a link was posted on this thread that said EXACTLY what I too have stated in the same terms. This OP doesn't have the signs and symptoms of ALS, as listed on that link.

I will reply no further to this thread.

It was a link to the info Carys, so then people could choose to open the link or not. I don't think anybody was being aggressive, only that they disagreed with what you were saying. I think that was happening both ways though to be fair.

melfish
15-01-18, 23:01
Exactly, FMP.

I wouldn't go on a rabies thread and repeatedly state how "slight and subtle" the symptoms were, even giving a detailed example, because that is fear-mongering pure and simple. The poster is being disingenuous in the highest order to suggest they were only trying to help. For shame.

If that were the case, they would have stopped after saying the OP didn't show the typical symptom progression. Period.

---------- Post added at 14:01 ---------- Previous post was at 13:55 ----------

That is the sort of nonsense I'd expect from the Daily Mail, not a senior member on here who should know better.

Carys
15-01-18, 23:01
It is you who is overtly aggressive and shows no ability to understand my intentions and aims to help. This response in itself is really unpleasant.

You are going to spend your life being triggered, as you will pass people in the street who have MND, and spend your life stressing about something you don't have.

I want nothing further on this forum if this is how people are now treated when aiming to help. You saw my very first post where I said the OP didn't have 'subtle symptoms' and picked up on that word it in a way that was grossly unfair. Yes, you know what symptoms of all sorts of things can be subtle....heart attacks, cancer, diabetes.....but my point was the OP DOESNT HAVE THEM. You have misrepresented me entirely and painted me in a light which is very unfair.

You have got some serious problems with your attitude and to say I'm outraged doesn't even cover it.

Fishmanpa
15-01-18, 23:02
Exactly, FMP.

I wouldn't go on a rabies thread and repeatedly state how "slight and subtle" the symptoms were, even giving a detailed example, because that is fear-mongering pure and simple. The poster is being disingenuous in the highest order to suggest they were only trying to help. For shame.

If that were the case, they would have stopped after saying the OP didn't show the typical symptom progression. Period.

She didn't and I don't believe it was done so to trigger anyone. She stated what happened to her father. Granted, I can see how the HA mind would grab onto that for dear life but it wasn't a false statement.

Positive thoughts

melfish
15-01-18, 23:12
With respect, FMP, she took pains to emphasise this was the case generally


In its early stages yes the changes are very subtle. It doesn't just BAM hit you overnight, one day you can swallow the next you can't, one day you can move a leg , next day you can't. Put it this way....my father (who has had it for a decade now) knew about very small internal and physical changes well before we could physically see them. Some of those changes were as tiny as feeling a tiny piece of food kept getting stuck in a specific part of his mouth when chewing. This is what I refer to as subtle. Admittedly his form is very slow progressing (however he is totally locked in now), but the same applies to even faster progressing forms; there are very minor almost inperceivable changes at the start.

jojo2316
15-01-18, 23:12
Ok so this is very triggering, because we with HA really fear the possibility of subtle symptoms. But I think it is unfair to say Carys was trying to upset - in fact I think she was trying to do the opposite and given her personal experience that cannot have been easy.
Like FMP says, the disease will begin with a spectrum of severity. Carys father has lived for ten years, which is highly unusual. But.... his condition is real, ours are almost certainly not. So I think they probably do not need our anger....

Fishmanpa
15-01-18, 23:18
With respect, FMP, she took pains to emphasise this was the case generally

With respect, we'll have to agree to disagree. There was no use of the word "generally". That's your interpretation. I knew the ALSers would read that and freak the hell out. Your reaction affirmed that.

Regardless. You, the OP or any others who have ever posted ALS fears in the time I've been on the boards has ever been diagnosed.

Positive thoughts

Carys
15-01-18, 23:29
OK, I've calmed myself.

Look I only added that comment which you copied and pasted about subtle symptoms as YOU asked me to define it melfish. If you look at my original context of the comments, I stated that there were a range of subtle symptoms which the OP did NOT HAVE (and I wasnt going to comment on them).

Following that you picked up on the word 'subtle' and asked me a continued question about that term, which I answered truthfully and you then became unhappy about that. I appreciate that you are scared of subtle symptoms, but you are missing the important point I made, which has now become lost...those symptoms were not present in the OP's discussion.

I spend my day working with terminally ill people (with various conditions, MND, cancer, COPD, heart disease and more). I support them in the community, they are isolated, lonely, scared and very ill. Therefore if asked a question I will give an honest and upfront answer and am used to discussing some pretty tough things (and yes, it does trigger my own HA lol). I can see you found it upsetting, but it is never my intention to upset anyone and always my intention to be supportive.

I genuinely will leave it at that now, as this has really got out of hand.

Kind wishes

I will

tryingtosurvive1
16-01-18, 00:32
The real relief from HA is knowing that our fear, while possible, is extremely improbable and no different from any other equally improbably event that we are NOT fixated on. If overcoming ALS fear means convincing ourselves 100% we don't have it, we will never fully move beyond HA. In general this is how OCD is overcome; learning to live with uncertainty.

So beyond the first "twitches don't equal ALS" I don't think we should dwell on the details of the disease in these threads. The most frustrating threads on aboutbfs occurred when people started swapping clinical details and getting mad at each other. The point is ALS is rare and there are many equally rare things we don't fear; so why this?

melfish, I think it is unfortunate that you are so consumed with this worry. From the outside it seems really too bad and no different from the person who fears the "invisible bat."
Carys, I understand you were trying to help, but details from the front lines, so to speak, only inflame the HA people. I'm sorry about your dad.

Fishmanpa
16-01-18, 00:42
The real relief from HA is knowing that our fear, while possible, is extremely improbable and no different from any other equally improbably event that we are NOT fixated on. If overcoming ALS fear means convincing ourselves 100% we don't have it, we will never fully move beyond HA. In general this is how OCD is overcome; learning to live with uncertainty.

With your permission TTF, I would like to use that as tomorrow's Positive thought :D Brilliant statement!

Positive thoughts

melfish
16-01-18, 01:02
I get that it's statistically unlikely. But that's of no solace to the unfortunate people who have it, and of little reassurance to those like me who have worrying symptoms. I wasn't scared of ALS, it wasn't on my radar, until I googled what I was experiencing. That's when it all went to shit

tryingtosurvive1
16-01-18, 01:32
Have you seen a neurologist, melfish? I don't think you have ALS, but their reassurance would actually mean something from a medical perspective. (I know it is against the credo of this board, but I sometimes wonder if the massive delays in the NHS with respect to seeing specialists make people suffer needlessly. Everyone has the right to *one* specialist opinion-that's my belief. I don't know if you're in the UK and this is your situation though.)


fishmanpa, feel free to use that! I have OCD btw.

---------- Post added at 16:32 ---------- Previous post was at 16:26 ----------

I'm in the US . . . specialists are easy enough to get to . . . *if* you have good insurance

melfish
16-01-18, 02:10
I'm in the US and have good insurance, just not good access

---------- Post added at 17:10 ---------- Previous post was at 16:41 ----------

In any case, this is not my thread. I hope Jamie was able to get some reassurance amid the chaos

tryingtosurvive1
16-01-18, 02:14
ok.

atl
16-01-18, 07:13
Ah dang....had a bit of a relapse today after tripping over my own foot playing basketball. Then read this thread :(

The "fatigue" in my hand also is what worries me.

axolotl
16-01-18, 10:47
Ah dang....had a bit of a relapse today after tripping over my own foot playing basketball. Then read this thread :(

The "fatigue" in my hand also is what worries me.

This is from experience... When you're spiralling reading the posts of others going through the same fears can be a dangerous thing to do. You'll think you'll soak in all the sage advice they get from others, but what actually happens is you often soak up the thoughts and fears of the OP. This can make you go "someone else is fearing this for the same reason, so it must be a valid reason!" or "wow, I didn't even think of that bit!".

With the more common fears on here (ALS, lymph nodes, etc.) this forum can act a bit like a crowdsourcing of fear where sufferers, without knowing, exchange notes about their "research". Just be careful.

And in response to your post, if everyone who tripped over had ALS it'd be an epidemic, wouldn't it?

Carys
16-01-18, 11:16
What was difficult in particular about this thread, that led to 'medical/symptom talk' was that the OP is clearly very scientifically aware and had medical background. Poor Jamie is going to come back here and see this chaos :ohmy: He was also very aware of signs and symptoms and work in that field, and asked very specific questions that IMO were easy to reassure about once the progress of MND were commented on as different/inconsistent to his own. Jamie's questions indicated a high level of understanding of biology, after that I responded in a way that I thought would easily reassure Jamie.

Now, I (rather dumb I know and this is where is went wrong) didnt realise that every ALS person was picking up on this thread, nor did I have any awareness that Melfish had her own fears about MND at all (another user later let me know of this after thread had run its course), until she picked up on my words to Jamie and got stressed. If it had been Melfish asking things as the OP the responses would have been different, as through the thread you would become aware of her triggers and fears and counter them.

I agree, if you are triggered by a particular thing then reading a thread about the same topic may not go in the direction that is helpful to you personally. Everyone asks different things and responses are individually tailored by people to people.

I've learnt some things from coming here though (I've not been on here for such a long time). Some details are better left to private messages, as everyone reads everything and when you think you are helping one person you are possibly harming another. It is incredibly hard to reassure anyone until they have the skills to reassure themself, so you get stuck in giving more and more details this may not be helpful long term. My current work with those who are genuinely ill makes me probably far too 'open' for those with HA and so I think I'll give this HA forum a miss.

I apologise to Jamie, when he returns to this thread for the ensuing chaos.

One final thing; when I was 16 I developed HA from a panic attack. After that I had so many serious illnesses - liver faliure, a brain tumour, a stroke, blood clots, heart attacks, pulmonary embolisms.....you name it I was having it with utter conviction, I searched my body for signs and of course found them. I actually was so convinced and my brain was using its power to reenforce everything, that at one point I couldn't walk and use my left side and has slurred speech and just lay in bed. Everything was totally real, it was there, but nobody would understand or believe me that they were real. I am still here at nearly 50 with none of things having happened. The mind is so powerful, it can negatively affect you but that same power of the mind can be harnessed in reverse as a positive force. Its harder at the start to reverse it, as fear overrides everything else. I wish you ALS fearers the best of fortune and am sure you will be ok, but today I'm off to see my own MND family member who is actually happy and feels he has life quality.

Take care all

atl
16-01-18, 23:55
This is from experience... When you're spiralling reading the posts of others going through the same fears can be a dangerous thing to do. You'll think you'll soak in all the sage advice they get from others, but what actually happens is you often soak up the thoughts and fears of the OP. This can make you go "someone else is fearing this for the same reason, so it must be a valid reason!" or "wow, I didn't even think of that bit!".

With the more common fears on here (ALS, lymph nodes, etc.) this forum can act a bit like a crowdsourcing of fear where sufferers, without knowing, exchange notes about their "research". Just be careful.

And in response to your post, if everyone who tripped over had ALS it'd be an epidemic, wouldn't it?

I just wanted to say thank you for your response, and you're 100% right. When I get triggered (like tripping over my own feet) it is so hard to resist that pull to go engage with that worry and get some reassurance to try and get rid of the anxiety. But then I end up just spiraling deeper. Always.

Thanks again,
ATL

AnxiousJamie
24-01-18, 20:52
Hey all!! I didn’t even realize that people were still responding to this post. I never got any notifications. I appreciate everyone’s input, honestly. I did get a little nervous about “subtle” changes bc I would characterize my swallowing issues as subtle. I am not aspirating liquids but I am penetrating liquids. I’m a medical speech pathologist and I work daily with swallowing mechanics. I know where I’m having the issues, I just need to know why??

I haven’t been having any speech issues. And my swallowing was somewhat better but the past couple of days the coughing with thin liquids has returned. So of course has my anxiety. Carys, I sincerely appreciate your response and I do feel a bit ashamed bc you are actually going through this with your father. I am very sorry about that. I also appreciate all the other responses and empathize with melfish and others who are fearing this dreaded disease.

This is such a vicious cycle!!

Thanks again to all. Also, I’m a girl. ;)

AnxiousJamie
10-02-18, 03:32
Ok this all started with yawning frequency! I came across a article that said this was sometimes a sign of bulbar ALS. At that same time, I had remembered that 2 days in a row I had coughing with thin liquids.

Now fast forward 4-6 weeks....

I am no longer having the frequent yawning, but I continue to have at 3-4 “choking with water” episodes a week. No issues with food, except for feeling it stuck occasionally. In the back of my mind I keep thinking bulbar, bulbar, bulbar. And then today.....TWITCHING in my right calf. I can’t see it or feel it from the outside and maybe twitching isn’t the right word. It feels like a tightening in one spot that rhythmically tightens and releases. It’s been happening since around lunch time today, so roughly 8 hrs. It’s not constant, but it happens maybe like 30-40 times an hour. It doesn’t hurt. Of course I’m freaking out! I read that with BFS, the twitch stops with muscle use. However using the muscle has no affect on this. That has me very very nervous!! What is going on?!?

au Lait
10-02-18, 18:46
Maybe this has already been pointed out, so I apologize if this is repeatative. But a lot of people here think they have ALS. And, to my knowledge, a total of 0 of them actually have been diagnosed with it.

ALS, and anything neuro really, is a very common target for health anxiety to focus on. Because you can take literally any minor daily occurrence - a twitch, a muscle spasm, water going down the wrong pipe, or even a yawn apparently - and anxiety can twist it into a deadly symptom. But it’s just....not. Those things are normal things that happen to every healthy human being.

People yawn more when they aren’t getting enough oxygen to their brain. People who are chronically anxious are often in a state of mild hyperventilation. We’re so used to breathing shallowly that we don’t even know that we’re doing it. Being anxious can cause a sensation of having a lump in your throat and difficulty swallowing.

You can literally find normal, non-ALS reasons to explain every fear in every ALS thread on this forum.

But that’s why ALS is such a common health anxiety fear. Because the “symptoms” are just ambiguous enough that anxiety can twist literally any daily bodily function into a sign.

The fact that so many people with health anxiety think they have it should be proof enough that it’s an anxiety thing and not true neurological illness. You can’t all have this super rare neurological disease. How could it be possible that such a large section of people with health anxiety just so happen to also have this very rare condition?

AntsyVee
10-02-18, 21:20
Maybe this has already been pointed out, so I apologize if this is repeatative. But a lot of people here think they have ALS. And, to my knowledge, a total of 0 of them actually have been diagnosed with it.

ALS, and anything neuro really, is a very common target for health anxiety to focus on. Because you can take literally any minor daily occurrence - a twitch, a muscle spasm, water going down the wrong pipe, or even a yawn apparently - and anxiety can twist it into a deadly symptom. But itís just....not. Those things are normal things that happen to every healthy human being.

People yawn more when they arenít getting enough oxygen to their brain. People who are chronically anxious are often in a state of mild hyperventilation. Weíre so used to breathing shallowly that we donít even know that weíre doing it. Being anxious can cause a sensation of having a lump in your throat and difficulty swallowing.

You can literally find normal, non-ALS reasons to explain every fear in every ALS thread on this forum.

But thatís why ALS is such a common health anxiety fear. Because the ďsymptomsĒ are just ambiguous enough that anxiety can twist literally any daily bodily function into a sign.

The fact that so many people with health anxiety think they have it should be proof enough that itís an anxiety thing and not true neurological illness. You canít all have this super rare neurological disease. How could it be possible that such a large section of people with health anxiety just so happen to also have this very rare condition?

Great post ^^^

AnxiousJamie
11-02-18, 05:19
Great point. I always tend to obsess over the most rare illnesses... ALS, brain amoeba, rabies, etc. I think thatís the whole irrational part of my anxiety. It really is so interesting how many of us are all worried about the same weird and obscure diseases.

atl
11-02-18, 06:02
True, and "weakness" is also very vague and susceptible to feeling a particular way.