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melfish
26-10-17, 23:57
Just wanted to doublecheck a couple of things with those of you in the know. There's conflicting info all over the internet (quelle surprise):

1) You absolutely can't accurately perform this on yourself, right?
2) A "silent" result is normal too?

Josh1234
27-10-17, 02:56
Yes and yes

Also, knowing your delusion, I need to add, Babinski is not considered when diagnosing ALS.

melfish
27-10-17, 03:04
Yes and yes

Also, knowing your delusion, I need to add, Babinski is not considered when diagnosing ALS.

Thanks, Josh. It is though!

Josh1234
27-10-17, 04:16
Thanks, Josh. It is though!

It's really not, though. It's so far down on the list of things they are looking for diagnostically, it's barely worth mentioning.

melfish
27-10-17, 04:24
Hmmm, I'm not sure you're right there. Abnormal reflexes are one of the three key diagnostic issues, along with weakness and atrophy.

Would you believe it if I told you I'm now afraid of my feet, scared I'll inadvertently "babinski" myself. It's every bit as crazy as it sounds. I used to always run around barefoot, now I'm always in boots or sneakers :(

nivekc251
27-10-17, 05:47
I hope time will help you with your ALS phobia. We twitchers understand how scary it can be, but you need to condition your brain to see these twitches for what they truly are .... harmless. You have probably been twitching for years you just never really noticed. Everyone twitches. I forgot about the babinski test until i read this. I use to use my keys lol. You have to just let it go that's the only way go get past this. If u feel or see a twitch f it . It's just a twitch ! I have a hot spot on my hand for 2 days now I now enjoy watching it, a year ago I would have schedule an appointment with my neurologist. Babinski is used for testing upper motor neurons, so if one would associate it with ALS he or she would have other major symptoms along with it. I was told this by a neurologist. A silent babinski is supposedly harmless if no other major symptoms persist. A Neuro surgeon I work with just told me that lol. It's best to leave all these tests to the professionals they know what to look for.

melfish
27-10-17, 06:09
Thanks, Nivek. I was wondering that today: whether a Babinski sign would occur along with other UMN issues like spasticity or clonus. One would assume so.

tan235
27-10-17, 06:14
Oh god I twitch everywhere! My eye, my legs are constantly twitching, my hands, my back, shoulders, everywhere - I've been twitching for almost 6 months straight. I'm over worrying about it to be honest it's far too draining, I'm not even going to look up Babinski and I'm proud of myself for it.... * sweats - hand tremble as they slowly hover over the B* NOOOOOOO!!!!! I wont I tell you!!!!!!!!!!!

melfish
27-10-17, 06:23
Good idea, Tan. Ignorance is bliss. I wish I could unread all the stuff I've ever laid eyes on about this cruel disease. I wish it weren't in my head.

nivekc251
27-10-17, 06:49
You have to stop looking into it Mel. And just accept whatever happens happens. I thought man if I do have this wtf can I do about it? I'm sure I would regret all the useless worrying I dis when I was able to walk and talk lol. I started living not giving a dam about it and enough time had passed to prove to myself I was ok. We are all promised death, so we all need to live while we're here! Stop p all this worrying and panicking, and go live. Leave the research and test to the doctors and trust them. This phobia is horrible and just like ALS it too can make you a prisoner of your own body. Stay busy and start working out or do yoga lol. BFS is a mystery don't try to understand it just accept it for what it is. BENIGN! :yesyes:

melfish
27-10-17, 06:56
I do work out, lift weights X4 a week. But it's bulbar I fear. I've had the quivering tongue, and perceived speech/swallow issues for over five months now. Worst five months of my life. You make a good point though, I need to try harder to put that into practice. It's just that the fear - which waxes and wanes - gets the better of me some days. Thanks!

pulisa
27-10-17, 08:14
Remember what you said on the BFS thread about the wonderful advice from a fellow ALS symptom addictee....? Just stop reading this stuff and making bulbar/ALS the centre of your life. No excuses. You have the choice-those diagnosed do not.

tan235
27-10-17, 08:28
And that's an amazing thing the previous poster said - we are becoming trapped within this fear, we are trapping ourselves, we might as well have some debilitating disease at least then we can stop searching for one! Having hypochondria is enough - I'm not interested in having anything else! I could have it but she's also right, what if you/we do - we can't do anything - live life! Let's stop worrying!!! Let's all boycott GOOGLE together!!!!!!!!!!!! I just drank a beer as well - I haven't had a beer in years as it makes my heart beat fast and I fear I'll have a heart attack but I don't care tonight! I'm going crazy - no googling and drinking beer woot what next, I might leave my house!

KK77
27-10-17, 13:38
Just wanted to doublecheck a couple of things with those of you in the know. There's conflicting info all over the internet (quelle surprise):

1) You absolutely can't accurately perform this on yourself, right?
2) A "silent" result is normal too?

What the devil are you up to, Melfish? :lac:

Babinski is what babies get when you tickle their feet, and if you've had a few too many, a classical musician :wacko:

Wilburis
27-10-17, 14:00
Hi

Ive seen 2 neurologists and had 2 silent Babinski reflexes.

Both of the have said its classed as normal.

x

JoeCanuck
27-10-17, 14:14
One thing that I remember reading that helped me a lot with my fear of speech/tongue/swallowing issues leading to those things that will remain nameless was a post somewhere that basically said:

"If people aren't constantly asking you to repeat yourself, or asking you if you're drunk, then you aren't having this issue".

melfish
27-10-17, 16:26
Remember what you said on the BFS thread about the wonderful advice from a fellow ALS symptom addictee....? Just stop reading this stuff and making bulbar/ALS the centre of your life. No excuses. You have the choice-those diagnosed do not.

It was by a PALS, but that's just splitting hairs. I know, Pulisa, and that was just days ago. I was starting to turning a corner then (or so I thought). I hate how vulnerable HA makes me to suggestion. I can read one thing, have one thought, and I am right back in it.

---------- Post added at 08:20 ---------- Previous post was at 08:19 ----------


And that's an amazing thing the previous poster said - we are becoming trapped within this fear, we are trapping ourselves, we might as well have some debilitating disease at least then we can stop searching for one! Having hypochondria is enough - I'm not interested in having anything else! I could have it but she's also right, what if you/we do - we can't do anything - live life! Let's stop worrying!!! Let's all boycott GOOGLE together!!!!!!!!!!!! I just drank a beer as well - I haven't had a beer in years as it makes my heart beat fast and I fear I'll have a heart attack but I don't care tonight! I'm going crazy - no googling and drinking beer woot what next, I might leave my house!

Haha, that's the spirit! Your post make me laugh, and it's so true

---------- Post added at 08:21 ---------- Previous post was at 08:20 ----------


Hi

Ive seen 2 neurologists and had 2 silent Babinski reflexes.

Both of the have said its classed as normal.

x

Thanks!

---------- Post added at 08:25 ---------- Previous post was at 08:21 ----------


One thing that I remember reading that helped me a lot with my fear of speech/tongue/swallowing issues leading to those things that will remain nameless was a post somewhere that basically said:

"If people aren't constantly asking you to repeat yourself, or asking you if you're drunk, then you aren't having this issue".

Yes, I remind myself of this frequently. My husband can always tell if I've even had a sip of alcohol, and he hasn't said anything.
You do read where people with bulbar onset are first worked up for stroke, which suggests the change in speech is indeed sudden ...

---------- Post added at 08:26 ---------- Previous post was at 08:25 ----------


What the devil are you up to, Melfish? :lac:

Babinski is what babies get when you tickle their feet, and if you've had a few too many, a classical musician :wacko:

Heh, it's all those things, but also one of the signs of an UMN problem

Fishmanpa
27-10-17, 16:31
I thought Babinski was head of the Polish Mob :roflmao:

Positive thoughts

melfish
27-10-17, 16:51
I thought Babinski was head of the Polish Mob :roflmao:

Positive thoughts

Ha ha

I thought I read in the past where you said your wife had a silent babinski and it was normal? Maybe it was someone else.

pulisa
27-10-17, 16:58
Who or what is a PALS, melfish?..Actually I dread to think! (And do I need to know?:D)

I think for me it would be a question of going completely cold turkey on all things you know what. I can't do half measures on things which trouble me-yes I know that's not the ideal but with me I can't afford to give these things houseroom once they really affect me to the point where they are detrimental to my mental health. It would take tremendous self will though and you'd need support from people in your life you could trust to help you not enable you. I know you have kept this secret from your family and friends but you really do need a loved one to help you regain your life away from you know what..

Capercrohnj
27-10-17, 17:03
PALS= person with ALS. It's a term used on the ALS forum which Mel should not be anywhere near.

nivekc251
27-10-17, 17:03
Hancock and Josh really helped me out. I was the same way I let my yard go to crap, didn't wash my deal, didn't work out , and turned down invites to go do anything. I was always distracted at work doing strength tests and looking at my calves and hands twitch. I'd wake up with no twitches and when I finally got one I would feel like I wanted to vomit. Those two made me realize that if I had it there's nothing u can do, and also showed my how irrational this fear is, and how I turned it into an ALSphobia. Cheers read the signature at the bottom of fishmanpa's posts and live by that because life is too short to be living in fear.

Fishmanpa
27-10-17, 17:03
Most people have no clue what this reflex test is even called (it'd be a good Jimmy Kimmel routine to ask people on the street ~lol~) so it's obvious to me that your anxiety is desperately trying to hold onto anything to keep you in it's grip.

Silent or spilling it's guts to the judge and jury, it doesn't matter in this instance.

Good luck and as always...

Positive thoughts

melfish
27-10-17, 17:34
Who or what is a PALS, melfish?..Actually I dread to think! (And do I need to know?:D)

I think for me it would be a question of going completely cold turkey on all things you know what. I can't do half measures on things which trouble me-yes I know that's not the ideal but with me I can't afford to give these things houseroom once they really affect me to the point where they are detrimental to my mental health. It would take tremendous self will though and you'd need support from people in your life you could trust to help you not enable you. I know you have kept this secret from your family and friends but you really do need a loved one to help you regain your life away from you know what..

It stands for "person with ALS".

Yes, I am very much an all or nothing type too. I generally throw myself in 100%, then abandon 100%. I'm hopeful this will work likewise with my current disabling obsession.

---------- Post added at 09:34 ---------- Previous post was at 09:05 ----------


Hancock and Josh really helped me out. I was the same way I let my yard go to crap, didn't wash my deal, didn't work out , and turned down invites to go do anything. I was always distracted at work doing strength tests and looking at my calves and hands twitch. I'd wake up with no twitches and when I finally got one I would feel like I wanted to vomit. Those two made me realize that if I had it there's nothing u can do, and also showed my how irrational this fear is, and how I turned it into an ALSphobia. Cheers read the signature at the bottom of fishmanpa's posts and live by that because life is too short to be living in fear.

You are describing me. Yesterday, I was dry-retching from fear. It's no way to live. :weep:

pulisa
27-10-17, 17:42
I am all for a 100% cold turkey approach on this one. You would never want to take or leave ALSophobia again or be selective about reading up on it again. You need it excised from your current non-life.

MyNameIsTerry
27-10-17, 17:42
PALS= person with ALS. It's a term used on the ALS forum which Mel should not be anywhere near.

So, a layman with no medical training who has ALS and assumes they can substitute for a highly trained specialist?

I guess it's the same as us diagnosing anxiety though.

pulisa
27-10-17, 17:43
But after you have 100% abandoned it what illness would you move onto next?

melfish
27-10-17, 17:44
Most people have no clue what this reflex test is even called (it'd be a good Jimmy Kimmel routine to ask people on the street ~lol~) so it's obvious to me that your anxiety is desperately trying to hold onto anything to keep you in it's grip.

Silent or spilling it's guts to the judge and jury, it doesn't matter in this instance.

Good luck and as always...

Positive thoughts

I know it sounds crazy. It's crazy to me too. But I even take my socks off a certain way, because that can elicit a response too. (Neuros will watch for it, when a patient removes their socks, because they aren't paying attention like they might be during an official test with a scraper.)

It sucks that I even have to think like this, but because I now know, I can't be oblivious to it like I used to be, like a normie is.

pulisa
27-10-17, 17:45
So, a layman with no medical training who has ALS and assumes they can substitute for a highly trained specialist?

They probably know just as much about ALS as a specialist sadly

melfish
27-10-17, 17:45
But after you have 100% abandoned it what illness would you move onto next?

I went for two decades without a fullblown HA episode. I'm hoping for that kind of remission.

pulisa
27-10-17, 17:48
I went for two decades without a fullblown HA episode. I'm hoping for that kind of remission.

Remission would leave a huge gap in your life which without appropriate treatment would be very difficult to manage I would imagine?

melfish
27-10-17, 17:54
So, a layman with no medical training who has ALS and assumes they can substitute for a highly trained specialist?

I guess it's the same as us diagnosing anxiety though.

Huh? You've taken Pulisa's comment out of context because you don't know what it's referring to. It had nothing to do with a PALS diagnosing ALS or not, or even with babinski. It was about switching off the ALS phobia, in fact.

---------- Post added at 09:53 ---------- Previous post was at 09:49 ----------

Terry, you sure have a lot to say about HA without having ever experienced it. Yes, I know, I know, OCD has some overlap, but it's not the same entity.

---------- Post added at 09:54 ---------- Previous post was at 09:53 ----------


Remission would leave a huge gap in your life which without appropriate treatment would be very difficult to manage I would imagine?

Yes, I am concerned about that. All this high-level anxiety will want to settle somewhere

MyNameIsTerry
27-10-17, 18:02
I didn't realise we had to all have something to discuss it?

melfish
27-10-17, 18:13
I didn't realise we had to all have something to discuss it?

I appreciate all input, and you have good insight, but there's no need to comment when you uncertain what you're commenting on. What you wrote made no sense. Nowhere did anyone suggest a PALS was giving medical advice, or that I was taking it.

---------- Post added at 10:13 ---------- Previous post was at 10:09 ----------

That said, those people are seriously knowledgable, more well-versed in ALS than many general neuros.

MyNameIsTerry
27-10-17, 18:19
I misread it as I didn't see the bit in between and assumed a connection given you are asking about a test they would know but we wouldn't.

But I'll disagree on your OCD part.

So what are you going to do now? Test or ask us about them or work on why you are even asking about them? Have you come to the conclusion that this is about anxiety? If you've reached that point then it's now about the work needed so what comes next for you?

Fishmanpa
27-10-17, 18:22
Respectfully, "those people" are dying or have a loved one dying from that illness. I find it abhorrent that anxiety sufferers post let alone read their threads over something they don't have or are even close to having!

There's a guy on the OC forums who has worn out his welcome and if I C&P'd the post, you would see all the same patterns, consulting Dr. Google, multiple tests and doctors and STILL disrespecting those suffering. HA is a selfish mental illness.

Positive thoughts

melfish
27-10-17, 18:29
Respectfully, "those people" are dying or have a loved one dying from that illness. I find it abhorrent that anxiety sufferers post let alone read their threads over something they don't have or are even close to having!

I haven't signed up, let alone posted. But, yes, I do read their "Do I have ALS?" section, to my own detriment usually.

I'm not sure how that's disrespectful, in even the most abstract sense.

MyNameIsTerry
27-10-17, 18:40
I haven't signed up, let alone posted. But, yes, I do read their "Do I have ALS?" section, to my own detriment usually.

I'm not sure how that's disrespectful, in even the most abstract sense.

It's not. It's public. Anyone without even HA might be reading it. It's a price we pay for public forums just like how non anxiety disorder sufferers may be reading this one. Is that disrespectful to us?

But it's certainly not good for your HA, whatever form that takes. Within OCD it's only a reinforcement of a cycle giving it importance through ticking the boxes it expects. For GAD it will differ a bit, for Somatoform Disorders it will be closer to OCD as it's based on obsessive thinking. But for all, it's still spending time in something to make it important to the subconscious.

So, how about cutting any reading about it back to eliminate it? ERP or the lesser successful cold turkey approach, both can work depending on the person. Some prefer cold turkey.

The same with any self testing or checking. You wouldn't be doing it without the theme in your current anxiety.

melfish
27-10-17, 18:44
It's not. It's public. Anyone without even HA might be reading it. It's a price we pay for public forums just like how non anxiety disorder sufferers may be reading this one. Is that disrespectful to us?

But it's certainly not good for your HA, whatever form that takes. Within OCD it's only a reinforcement of a cycle giving it importance through ticking the boxes it expects. For GAD it will differ a bit, for Somatoform Disorders it will be closer to OCD as it's based on obsessive thinking. But for all, it's still spending time in something to make it important to the subconscious.

So, how about cutting any reading about it back to eliminate it? ERP or the lesser successful cold turkey approach, both can work depending on the person. Some prefer cold turkey.

The same with any self testing or checking. You wouldn't be doing it without the theme in your current anxiety.

Yes, I am going to try to go the weekend without checking my tongue or worrying about touching my feet (this one's getting into bizarre territory for me) or reading the ALS boards. I expect an initial surge in anxiety, then hopefully a drop

---------- Post added at 10:44 ---------- Previous post was at 10:43 ----------

I am also going to try leaving the house. I'm getting avoidant about that, if not outright agoraphobic. I haven't eaten out in more than five months, so I'm going to watch a sunset over the Pacific tonight, then eat at an Italian restaurant I haven't tried.

KK77
27-10-17, 18:48
Yes, I am going to try to go the weekend without checking my tongue or worrying about touching my feet (this one's getting into bizarre territory for me) or reading the ALS boards. I expect an initial surge in anxiety, then hopefully a drop

---------- Post added at 10:44 ---------- Previous post was at 10:43 ----------

I am also going to try leaving the house. I'm getting avoidant about that, if not outright agoraphobic. I haven't eaten out in more than five months, so I'm going to watch a sunset over the Pacific tonight, then eat at an Italian restaurant I haven't tried.

Good. I think your obsession with ALS (and its intricacies) has reached monstrous proportions. You know logically what to do - it's just doing it now.

MyNameIsTerry
27-10-17, 18:54
Yes, I am going to try to go the weekend without checking my tongue or worrying about touching my feet (this one's getting into bizarre territory for me) or reading the ALS boards. I expect an initial surge in anxiety, then hopefully a drop

---------- Post added at 10:44 ---------- Previous post was at 10:43 ----------

I am also going to try leaving the house. I'm getting avoidant about that, if not outright agoraphobic. I haven't eaten out in more than five months, so I'm going to watch a sunset over the Pacific tonight, then eat at an Italian restaurant I haven't tried.

Yes, it's bound to increase. Just knowing you are going to resist something or change can bring that on let alone the triggering moments. If you can't just stop, the ERP way to reduce certain bits at at a time can work too. When I was eliminating compulsions I found some responded to one way whilst others to another so if something doesn't seem to be working don't let it get you down too much.

Getting out is a very good idea. Too much thinking time and less natural distraction are worse for us. Whilst these can also bring anxiety they are boosting our confidence and you can feel stronger (and happy to achieve stuff) from them. It gets less of a struggle to go out and you want to do more.

Whenever my anxiety has greatly worsened I've avoided going out. It's just part of the false self protection thing in overdrive. Shrinking your bubble eats at your confidence & self esteem. Taking control can be a springboard.

I hope it's a lovely sunset! Good luck.

Fishmanpa
27-10-17, 18:54
I haven't signed up, let alone posted. But, yes, I do read their "Do I have ALS?" section, to my own detriment usually.

I'm not sure how that's disrespectful, in even the most abstract sense.

I didn't say disrespectful. I said "abhorrent". i.e. inspiring disgust and loathing; repugnant. It also causes a level of self harm that you as well as those around you fall victim to.

Hey... it's your choice though right? Hope you find a way out of the rabbit hole.

Good luck and as always...

Positive thoughts

melfish
27-10-17, 18:58
I hope it's a lovely sunset! Good luck.

Thanks, Terry. The sunsets this time of year are amazing here. The green flash is visible to be naked eye

CleverLittleViper
27-10-17, 22:29
You mention that you hope for that same kind of "remission" from your HA.

Hoping for it won't make it happen. You have to actively seek it, and do something to achieve it. That may well mean taking the step to actually go to a doctor and get some help with your anxiety.

I'm not going to answer the question about this test or that test and its validity and whatnot because it has zero bearing here. It's not even worth shooting down it's that ludicrous.

You have to take some control, and dare I say it because I'm afraid I'll become the "take responsibility" woman I dreaded becoming growing up, take responsibility. :winks:

HA can only ever have as much power as you allow it. Or, you could continue down this rabbit hole and see where you end up. :shrug:

KK77
27-10-17, 23:22
You mention that you hope for that same kind of "remission" from your HA.

Hoping for it won't make it happen. You have to actively seek it, and do something to achieve it. That may well mean taking the step to actually go to a doctor and get some help with your anxiety.

I'm not going to answer the question about this test or that test and its validity and whatnot because it has zero bearing here. It's not even worth shooting down it's that ludicrous.

You have to take some control, and dare I say it because I'm afraid I'll become the "take responsibility" woman I dreaded becoming growing up, take responsibility. :winks:

HA can only ever have as much power as you allow it. Or, you could continue down this rabbit hole and see where you end up. :shrug:

I'm searching for a wife like you so please post your CV to KK, Complaints HQ forthwith :shades:

BTW - What an excellent post ;)

MyNameIsTerry
28-10-17, 02:21
You mention that you hope for that same kind of "remission" from your HA.

Hoping for it won't make it happen. You have to actively seek it, and do something to achieve it.

Yep, I agree with you. I'm not into passive strategies on their own, there needs to be goals & pulling yourself out too.

All that reprogramming of thinking is well known to stay in there unless you change it. Without working on it, you are just hoping it resolves itself through the same process.

melfish
28-10-17, 03:27
The clouds came in from the west and blocked my sunset. No green flash for me :(

Josh1234
28-10-17, 04:02
Hmmm, I'm not sure you're right there. Abnormal reflexes are one of the three key diagnostic issues, along with weakness and atrophy.

Would you believe it if I told you I'm now afraid of my feet, scared I'll inadvertently "babinski" myself. It's every bit as crazy as it sounds. I used to always run around barefoot, now I'm always in boots or sneakers :(

Upon clinical exam, asymmetrical hyperreflexia or absence of reflex is the picture they put together, along with spasticity and weakness. I assure you that Babinski is not a marker they put much stock in, let alone absent Babinski reflex.

When you gonna learn your lesson when trying to spar with me on this stuff? :shades:

melfish
28-10-17, 04:20
When you gonna learn your lesson when trying to spar with me on this stuff? :shades:

I am rarely wrong, Joshua :whistles:

MyNameIsTerry
28-10-17, 04:50
[walks in, spots flirting and slowly backs out of room] :winks:

Damn clouds but there is always tomorrow. Another reason to get out. :yesyes:

AntsyVee
28-10-17, 05:41
You mention that you hope for that same kind of "remission" from your HA.

Hoping for it won't make it happen. You have to actively seek it, and do something to achieve it. That may well mean taking the step to actually go to a doctor and get some help with your anxiety.

I'm not going to answer the question about this test or that test and its validity and whatnot because it has zero bearing here. It's not even worth shooting down it's that ludicrous.

You have to take some control, and dare I say it because I'm afraid I'll become the "take responsibility" woman I dreaded becoming growing up, take responsibility. :winks:

HA can only ever have as much power as you allow it. Or, you could continue down this rabbit hole and see where you end up. :shrug:

I agree. I’ve rarely seen anxiety just “go away.” And Mel, yours was brought on by stress and some traumatic events. Once the brain gets to that level of stress damage, it often needs help to repair itself.

---------- Post added at 21:41 ---------- Previous post was at 21:40 ----------

Also, I am disappointed in the contents of this thread. I thought you had found an Eastern European lover, Mel. :winks:

melfish
28-10-17, 05:47
Also, I am disappointed in the contents of this thread. I thought you had found an Eastern European lover, Mel. :winks:

Well, I am half Polish with a smattering of French