View Full Version : Did not want to join this club. And YES, I've read all the stickies!
Welcome to my first post (beside my intro.) I have nearly posted many times but found that just the act of writing let me put my CBT skills to use and dig myself out of my hole.
Not this time.
You can all see by which sub-forum I'm in what's got me going: ALS.
I've got the twitches (alllll over, but mostly in lower legs - exactly where people get them from BFS and stress and all that), I've got subjective weakness (not clinical, I don't think -- note, I also sat on my butt for ALL of lockdown, like, 14 full months), and I've got a bunch of other stuff that doesn't line up with ALS (tingling, blurry vision, double vision at the extremes of my visual field, trembling hands). I'm over 30 but under 40. Female. Can you hear me acknowledging this is probably not THAT? And yet. And yet...
This is the utter worst HA ever. SIGH.
...
While I'm here, we're sure absolutely none of us ever went on to get ALS, yes? Not that the plural of "anecdote" is "data," but still...
Sending best wishes to everyone else going through this. What a lousy club.
Hi Kylikki
Well. Welcome to the lousy club. I hope escape the quagmire soon. I’ve PM’d you
Want to update everyone: Twitching getting a bit better! Tends to come in clusters, now, with longer periods of nice calm quiet muscles, or be totally random and diffuse.
It probably helps that I have been firmly told by a medical professional that they don't think I have .... that. And that it is definitely not a brain tumor, either.
So what does that leave? Horrific posture, lack of sleep, and S T R E S S.
I think for HA sufferers, the hardest thing to accept is that your HA really CAN be the thing that is making you miserable, from top to bottom, front to back, start to finish.
Anyway, as I type this, I'm ready to move on. Please hope you don't see me back here any time soon! Sending best wishes and best of luck to everyone.
So so glad you are feeling better. And. Thank you so much for updating on here - if helps people searching threads so much xxx
Well. I made a terrible error last night and googled BFS and ended up on the ALS forums kinda by accident and of course the FIRST post I see is from someone who claims they presented as twitching first, weakness later (though his story made me think he wasn't a 100% reliable narrator, God rest his soul.) Then saw the "clean EMG" posts and realized I forgot to ask if mine were clean or not. Cue massive HA spiral. Ended up sobbing.
My twitching really does seem to be a tiny bit better, though. Only a tiny bit, but I'm clinging to any perceived improvement with both hands. Speaking of both hands, I also tried out a piece of playground equipment I passed today (I promise no children were waiting in queue for it) and succeeded in going hand-grip to hand-grip over 6 full bars from that thingee that looks like a ladder mounted parallel to the ground, that you're meant to hang off of. It was a run of 8 total. I think I could have done it but I didn't want to pull something. My right hand did feel worse than my left as I was doing it, but I felt a little better that I could! I also walked a mile and felt somewhat better by the time I hit the end. Tired! But better.
Anyway, my next little re-assurance project is, as a community service, tallying up us worriers. So far I've gotten through 4 pages of the 13 total here -- and found 44 distinct, credible individuals who worried about ALS/MND between 2009 and 2018. My thought was that I would look for people who have passed at least the two year mark of a) posting on this forum, about b) something other than ALS/MND symptoms.
So far:
14/44 "lost to follow up" / not enough posts
12/44 "probably not" / right at 2 year past symptoms threshold
18/44 "definitely nots" - still alive and still have HA, I guess!
This does make me feel a bit better. I'll keep tallying as a community service!
Hello hello, I've got through 27 more users who reported twitching (some posting in this sub, some on a BFS thread elsewhere.) Here are the REASSURING totals! I did discount some single posters / people who stuck around here for less than a year, and also a few folks who really didn't seem like trustworthy narrators. Here are the totals:
6/27 "lost to follow up" / not enough posts
4/27 "probably not" / right at 2 year past symptoms threshold
17/27 "definitely not" - still alive and still have HA!
I'm starting to think there's a great statistical study here for someone if they're interested. I'm doing this manually but could easily be automated. Would be fascinating to see if health anxiety really does latch on to certain diseases, and/or interesting to see just how common twitching really is, either in anxiety folks or even in "normal" folks, or both.
I will say, we are a twitchy bunch of people, it seems....
Hello hello, I've got through 27 more users who reported twitching (some posting in this sub, some on a BFS thread elsewhere.) Here are the REASSURING totals! I did discount some single posters / people who stuck around here for less than a year, and also a few folks who really didn't seem like trustworthy narrators. Here are the totals:
6/27 "lost to follow up" / not enough posts
4/27 "probably not" / right at 2 year past symptoms threshold
17/27 "definitely not" - still alive and still have HA!
I'm starting to think there's a great statistical study here for someone if they're interested. I'm doing this manually but could easily be automated. Would be fascinating to see if health anxiety really does latch on to certain diseases, and/or interesting to see just how common twitching really is, either in anxiety folks or even in "normal" folks, or both.
I will say, we are a twitchy bunch of people, it seems....
This is exactly the post I needed to read just now!
Today's stats (for which I combed through the Sticky on ALS and Why You Don't Have it!
25 unique, credible posters worried about ALS
9/25 "lost to follow up" / not enough posts (c'mon people, help a stats person out and stick around on this site!)
4/25 "probably not" / right at 2 year past symptoms threshold
12/25 "definitely not" - still alive, still have HA!
May I note that my own twitching disappears entirely while I chase down stats on all our collective twitching. Maybe I have found the cure!:roflmao:
Mikeyofboro
17-09-21, 21:38
Super post ! Love a bit of data and helps me realise that the chances of any of our worries being serious is low
Hello fellow Benign Twitchers! :D
I wanted to come back again and update that my twitching has reduced drastically in the past month.
I started taking vitamins, stopping testing my muscles every few minutes, and started to look for things that would make me happy instead of miserable, and voila! Things got better.
This isn't to say I have cured my HA -- I have not -- but I have got off the "what if" train for ALS specifically, at least.
Then last night I also had a bit of a bolt out of the blue from a documentary I was watching on Channel 4 -- the one where they follow a house through its whole history
There was a super brief moment in the programme where they described the shell shock men who fought in WWI experienced, and they showed some footage of two young men
They twitch and jerk uncontrollably, in a way that any neurologist would surely describe as outright myoclonic. It was very hard to watch
But suddenly I realized -- that's their own brain plus a bunch of objective psychological trauma doing that, not an organic disease
If it can happen to them and be so dramatic, what's to stop that from happening to us, at a much smaller scale?
Be kind to your mind, it does a lot to your body...
I really think you have a fab attitude kyllikki. And I am thrilled you are doing so well. And yes, those poor poor people struggling with “shell shock”….. if ever anyone needed convincing what mental trauma can do the evidence is right there (although of course I wouldn’t begin to compare my experiences to theirs- far far from it.)
Not so great update. I am back in the hole. My neuro confirmed my EMG was NOT clean, with evidence of denervation/reinnervation and fasics (or as she said, nerve damage) in both my TA and gastroc muscles. So I did not have the "I told you so" EMG. I had a "come back in 3 months because we have to follow this" EMG in my right lower leg. My left side EMGs and NCS were normal, though, and she felt the issue she saw on the EMG in that leg was due to nerve impingement at the relevant disc root. I can see why -- that's the "good" and at the moment "rational" answer for that specific symptom and test finding. Unfortunately, it doesn't address the twitches and issues *elsewhere* and while I know this is classic HA thinking, I find myself doin that "what if I have BOTH sciatica and ALS?" dance. So I am in the hole.
I told her my hand also feels slower and weaker from when I saw her last, and yes, I know, "feels" -- but the truth that I am dropping things and my coordination between fingers seems to have gotten worse. I have this bizarre feeling that my first finger is "stuck" to my second. My neuro said to get a carpal tunnel brace and wear it because that was the wrist that, while still "normal" on NCS, was slightly slower than the left side. I do have odd musculature in that hand, too, with a tendency to clasp my thumb in my palm and less muscle at the bottom of my thumb but more muscle between my thumb and first finger on the back of my hand, something which I used to chalk up to mouse and phone usage but now I am worried about, too. I do also have pain at the back of the wrist (under dorsiflexion, especially with weight, like in push up position) and at the base of the thumb, sometimes. But it's nowhere near as noticeable as the slow/"bent"
Then there's the fact that my vision issues and a new issue, a weird "bass" tinnutus thing, can both be caused by motor cranial nerve dysfunction, specifically CNs IV and VII. CN involvement is always a very bad sign.
In short, I am extremely upset and worried today. I'm sure someone will come and tell me "still not ALS" or "stop catastrophizing" but... I am in the hole.
Okay, this may sound like a stupid question, but are you okay with being in the hole or do you want out?
It's not an ideal situation, but your life doesn't have to end when you don't yet know anything for sure. Besides, it looks as though nothing you've been told suggests ALS.
Thanks, BlueIris, for your reply. I think I want what we all want: "certainty." Sadly life doesn't offer that, does it?
I am working through a book on HA now (Owens and Antony, "Overcoming HA", if anyone is familiar with it.) I'm on chapter 3 right now. I have set up and kept 3 appointments with a MH professional so far and have another today. I want to be less miserable, but I also want to live to see my toddler have a grandchild. Which, come to think of it, wouldn't happen if I was right and DID have ALS -- so what's my hurry to have an answer, exactly?
It is funny that I am having this degree of emotional reaction to a swift, incurable disease that so far my neuro doesn't yet think I have.
I wonder, though, how can you both get out of the hole AND pursue an answer to what's wrong with you?
I am not making the double vision in certain eye positions up, I flunked the "how many fingers" test in the neuro's office. And, so far, this is unexplainable.
I am not making up the twitching in R lower leg, it was on the EMG. This is explainable, given my disc issue.
I am not making up the R hand slowness, it was on the NCS. This is in theory explainable, in a borderline way.
The tinnitus would in theory be visible if someone grabbed an otoscope at the right moment, but you'll have to take my word for it! And, so far, this is unexplainable.
How do I pursue answers for all that while also combatting the HA? Or is that exactly what I need to learn?
It's what you have to learn, yes. Accepting what is and what could be, whilst also accepting that there are no clear answers. It's all about learning to live in the moment, and it's really not easy.
Wish you all the luck in the world.
Thank you your kindness and this sentiment, it is indeed one heck of a challenge. I am trying to let myself be upset when I need to be upset (today's that type of day) and also take action when I need to take action (maybe later today when I talk to my MH professional.) I think sometimes I get a bit frustrated that put so much emphasis on "beating" HA, when really, it's extremely likely -- and it's OK -- that we'll all have good days and bad days/relapses, in which we wallow for a while before we can get up the energy to feel better. Today's a wallowing day for me because of what my brain is taking as "bad" news. It's also the first time I've ever had a personal HA concern that wasn't just "empirically disproven" immediately, and I think that definitely has something to do with it. The last time I had this degree of "oh, I don't think this is going in the right direction" was in late January 2020 when, a full month before anyone else, I had fully prepped to quarantine for a month of pandemic. I think I am definitely worried that, once again, I am seeing "early signs" that nobody else wants to pay attention to.
kylliki-
You have bodywide but very subtle symptoms, many of which began or became worse AFTER you read that scary article. You have had some of these symptoms for months and, whilst you are occasionally developing new (HA induced??) symptoms- your existing symptoms are not progressing. And nowhere in your body is there actual clinical weakness. In spite of the fact that you have had some of your “als symptoms” for months. You do have a bulging disc in your spine, which your neurologist says explains the nerve damage she saw on your EMG.
BUT - If you hadn’t read THAT ARTICLE do you think you would ever have ended up in front of a neurologist having an EMG? I suspect….. maybe not??
The trouble with being bright- which I know you are - is you tend to believe your own bull****!
I just wanted to add that, in spite of having SERIOUS HA and OCD for many years , I have a feeling I was never as scared as after I had myself pushed into the ALS fear. That is , I think, a whole new set of horrors, obsessions, rumination, and hyper-vigilance of body , its movements, and of course, the damned twitching. It truly is horrible, and I feel for every person who finds herself/himself in that boat. Fortunately the statistics are on our side. Well... I hope they are on my side too. I am praying.
Thanks, BlueIris, for your reply. I think I want what we all want: "certainty." Sadly life doesn't offer that, does it?
I am working through a book on HA now (Owens and Antony, "Overcoming HA", if anyone is familiar with it.) I'm on chapter 3 right now. I have set up and kept 3 appointments with a MH professional so far and have another today. I want to be less miserable, but I also want to live to see my toddler have a grandchild. Which, come to think of it, wouldn't happen if I was right and DID have ALS -- so what's my hurry to have an answer, exactly?
It is funny that I am having this degree of emotional reaction to a swift, incurable disease that so far my neuro doesn't yet think I have.
I wonder, though, how can you both get out of the hole AND pursue an answer to what's wrong with you?
I am not making the double vision in certain eye positions up, I flunked the "how many fingers" test in the neuro's office. And, so far, this is unexplainable.
I am not making up the twitching in R lower leg, it was on the EMG. This is explainable, given my disc issue.
I am not making up the R hand slowness, it was on the NCS. This is in theory explainable, in a borderline way.
The tinnitus would in theory be visible if someone grabbed an otoscope at the right moment, but you'll have to take my word for it! And, so far, this is unexplainable.
How do I pursue answers for all that while also combatting the HA? Or is that exactly what I need to learn?
You can't pursue answers if you wish to be able to manage your HA. You have to trust your neurologist who is an expert in this field. You have to accept that your desire to be one step ahead in the diagnostic process will bring you misery.
Thanks, Pulisa, that is massively hard to hear, but I know you're probably right. As I said, God forbid I am correct, what would change?! It is 100% fatal, nothing even meaningfully slows it down.
It's not like I am talking about a curable cancer which could be "caught early"
If God forbid this is it, what's my rush to be properly diagnosed?? :wacko:
Lana and Jojo, you're both also right!
In fact, let's all pray everyone is right about me except me, please!! (Lana and JoJo and nicknak who I think was posting recently too, I am 100% sure you all do NOT have ***!!!)
Oh I forgot to mention. I have a challenge from my therapist not to Google anything related to *** for a full week, to try to eliminate at least one of my "safety behaviors."
I am only 24 hours in but I am managing. I have already wanted to google at least a dozen things, so it goes to show you how bad it's been in my head this week.
But I've noticed that this forum has, over the years, moved toward senior members really pushing "you must help yourself" -- so I am sharing this to tell everyone, I am trying.
Thank God, I am finally trying!
I think you should divert all your brain power and obvious intelligence into changing tack and channelling your mental energies into combatting your HA rather than feeding your HA with relentless "researching"/chasing "that" diagnosis which terrifies you but torments you with distorted reasoning.
You have the motivation to do it. You CAN do it. Listen to your therapist. You will really want to Google..You will feel you need to Google to retain that control but it's the very worst thing you can do. It's a very entrenched behaviour now but it CAN be broken with determination and support. You can never un-read Google so think of that every time you're tempted to just have a quick browse..It's just not worth the angst. Why do it to yourself? You can't know everything.
:yesyes:
I agree very much, thank you again, Pulisa! From my perspective only 24 hours into the "challenge" of eliminating one behaviour, I think I can definitely do this for a week.
Longer term, I can see it being harder
My therapist says "reasonable goals only" for right now!
I think a week's worth of "challenge" is "reasonable" but still very hard. You have your therapist to keep you on the straight and narrow though! I admire your resolve and determination to do your best this week and I'm sure that you will give it your all. It's a doable challenge and it gives you a defined focus.
pulisa I can't thank you enough for the support from afar, every bit helps. Not going to sugar coat it, it is hard!!
I have a check in with my MH person soon, before my weekly, so I do have the support. I am letting the thoughts occur to me and then just go, while successfully resisting the urge to google anything medical or seek medical reassurance.
My self checking behavior/somatic monitoring has EXPLODED because I have closed off one route for "information gathering" and my brain is channeling it into checking/hypervigilance instead --
which I know isn't good, but one thing at a time I suppose (Notably, my body wide twitching has come also come back... ugh.)
All my best
Well, back once again, trying my best to hold it together. I sent all my information to a specialist who only takes cases after review and... the office called back today to schedule my appointment. I was hoping they would simply reject me.
I am split: the doctor is literally an ALS expert.
Trying not to get ahead of myself.
Please pray for me -- appointment not until mid november.
Too much of an atheist to pray, but I'll send every scrap of positive energy I have in your direction. Thinking of you.
Did the neurologist you already saw refer you, or could you self refer?
I did self-refer.
Sorry, in prior post I meant to say:
"I am split: the doctor is literally an ALS expert" in an ALS approved center, but also at an institution that also extensively treats injuries and has treated one of my injuries before. This is good because a) I can trust their word as final, and b) no matter what is or is not wrong with me, I can get care for it through them.
I really hope I am setting myself up for an answer (and God willing a cure) once and for all, even if I have to wait a month for it.
The self-referral has laid you open to another month of ALS rumination though. What does your therapist say?
Do you think you will be able to trust their word as final? What sort of "care" will you accept?
Oh, I am certain my therapist WILL have something to say! :) I am still going strong on my no research promise, though. One step at a time, Pulisa... I am willing to go hand-to-hand with the dragon. I don't yet have the powers to simply zap it into non-existence with my mind!
I am proud of myself that I have sniffled and wiped a few tears but not had a complete meltdown today after getting this call. My view is, it doesn't really change anything at the moment: and it does set me up to be CERTAIN one way or the other.
[Re: zapping my HA, there's an image for you: all of us looking at our HA dragons and going "pew pew!" and being able to be free! :roflmao: If only, eh?]
It sets you up for another opinion and an opportunity to challenge this opinion, no matter how learned an opinion it is based on decades of professional practice though. So I would challenge what you say about this not changing anything. There is no such thing as certainty when it comes to HA.
I know I'm being tough with you but are there half measures when it comes to quietening this so-called dragon? Is it a living dragon or more of a rechargeable dragon which quickly comes to life when charged up with "the necessary"?
Oh, I think maybe you read my "it doesn't really change anything in the moment" the opposite way to how I intended it. I was being proud that this news (that the specialist is taking my case) hasn't completely unhinged me!
I am telling myself that them taking my case means nothing one way or the other right now, because I have not seem them yet.
As for the HA dragon, well... I think I do see it differently. I would rather make slow and steady progress towards vanquishing it than pretend I have conquered it and fail, learning nothing in the meantime.
I have a plan for my HA treatment, and I have a plan for my medical treatment. I am doing both and parallel and have decided that this doctor's word really is final for me, because she actually sees a high volume of MND/ALS patients AND other generic neuromuscular patients, and will know which one I am.
Whereas my first neuro was a migraine specialist.
A consultant neuro would still be very aware and alert to MND presentation though, regardless of their specialty. However you have made a decision which will hopefully bring you that definitive answer and you'll have a treatment plan as a result of that decision so that's a very positive move.
How do you plan to get through the next 4 weeks until your appointment though?
I think I will be ok! My "no "research"" goal is going very well, and even the self-testing behavior that initially exploded when I cut off the "research" is starting to quiet.
What isn't slowing down yet is the self-monitoring/hypervigilance, but you know I take a "one step at a time" approach.
I feel well supported for now. I imagine I will get more agitated as the appointment gets closer (probably come November) but I will take it one day at a time.
Also notable -- Had my first session of low back physio yesterday and he poked and prodded and stretched and then had me bend over this way and that and said "Yeah, there it is"
and explained I have a "stuck" disc on top of my injured one, that's not letting me bend in 2/4 directions smoothly, and which may be pushing down on the nerves below.
He then chiropractically adjusted me and oh my, that was.... something. (I never wanted to have that done before but he encouraged it!)
I can turn over way easier in bed now and twist and turn and reach for things without the funny constrained feeling I've had for over a year...
Please hope and pray for me that all this really can be resolved with the grace of God and hard PT work, because that's where I am going to invest energy until November!
And thanks so much for your support, Pulisa, I really do appreciate it.
Chiro work can be so brutal but if this can make your movement easier then it's all in a good cause!! No pain, no gain as they say!
I'm glad you have faith in the physio. He sounds as if he knows what he's doing. Keeping fingers crossed for you in terms of your physical improvement and a lessening of your HA as a result of that improvement.
Well, I have a small update: I have my very first diagnosed case of failure!
My CN IV isn't working properly, resulting in double vision in some gazes. I've been referred to a neuro-ophthalmologist.
Part of me wants to make sure anyone who hand-waves off double vision as "just anxiety" sees this. My deteriorating depth perception and double vision was NOT in my head.
Now, the good news: There's no evidence this is linked to early ***. None. Zip. Zero. I specifically asked and my Optho said they'd write a paper on me if it was that.
Other good news: I don't have full blown glaucoma yet, either! No need for meds yet! Hooray! It's amazing how much bodies can fluctuate from one reading to another.
Two more positives: my hand feels somewhat better since wearing a brace overnight, though I now get weird shock like feelings in my thumb sometimes; my speech subjectively feels better again (let's hope that lasts,) and my twitching has become less violent since starting on magnesium glycanate and B12 as suggested by first neuro.
I am really, really hope that "1+1+1+1" (all my isolated issues in various places) end up being... just isolated issues!!
Thanks all for listening.
I really hope you’re doing alright. I keep having good days and bad days with my anxiety. Sadly today is a bad day. I know how much a dirty EMG can super mess you up because it just keeps playing on your mind. I’m always here if you want a chat.
Coming back to update with some good(ish) news.
Here's the worry list vs the "real story" as it stands 4 or so months in:
Leg (twitching, numbness, weird gait) - entire leg (well both really) appears stronger with PT, but still twitching pretty frequently... and now so is other leg, mostly after being used differently, or during very high stress situations. Numbness has retreated significantly.
Gait sometimes still feels weird but usually only after taxing it, e.g. briefly running full tilt or running stairs.
Hand, same side - looked weird felt weird, grip felt like it was starting to go yet Neuro said no wasting, only some joint swelling. Based on that comment, I waited 2 months and then after it didn't get better went to see hand doc. Now proud owner of custom splint + anti-inflammatory prescription, plus ganglion cyst + tendonitis + arthritis diagnossis.
Quote from hand doc: "You have a bunch of overlapping things wrong, none of them severe but all annoying and not really fixable" ...hooray
Eyes, mostly same side but really both - still have double vision in one spot, but a tiny bit less bad than before? Not awesome though. Haven't seen neuro-optho yet.
Speech issues, perceived - still there but comes and goes and I suspect that means it's in my head. Also seems tied to whatever is going on with my eyes and ear, which I find interesting...
Muscle spasm tinnitus in one ear - surprise surprise, it's there when I am stressed and recedes when I am not, or when I "tell it off" by saying "brain, I refuse to listen to you going 'doom doom doom' into my literal ear. Go away." :roflmao:
Still twitching absolutely everywhere but again, a bit less so.
I do have a follow up that the neuro requested but I haven't scheduled yet, we'll see how that goes. A huge thanks to everyone who has been so wonderful.
Thanks to Pulisa in particular for earlier statement about how tricky it is to pursue things that might really be wrong with me (eyes, hand) without setting off my HA or indulging it. I've taken a policy of delaying, not "researching," and trying to replace HA behaviour with other things and so far it has helped quite a bit!!
I have been able to calm down really significantly but I would be lying if I didn't say I am still worrying from time to time.
I am so annoyed with myself.
I've managed to get past thinking my leg is weak. If anything, both legs appear to have gotten stronger, even though they don't look remotely the same (but I am used to that, I'm full of metal on one side.)
I've managed to accept my eye CN IV nerve palsy is probably not related to anything
I've managed to accept that my muscle clonus tinnitus is probably related to TMJ and stress
I don't think I am outright slurring my speech so I am trying very hard to let that go too
But my stupid right thumb is weak in abduction (ie it's REALLY easy to push down my "thumbs up" sign) and it's messing with my head. The thing that reassures me is that this thumb also *hurts* down into the wrist in even non-resisted full abduction, and has for a long time. But the stupid muscles at the base of the thumb also twitch a lot and... yeah.
I looked it up and evidently women should be able to resist about 2-3 lbs of pressure in thumb abduction. I don't know how much pressure I can resist but it seems WAY less than that.
Just having a hard day and trying very hard not to resort to scheduling more medical appointments, as I've already seen a hand guy and two neuros about this; neuro 1 did an NCS and said still within normal range but less robust than left hand, likely mild carpal tunnel. Neuro 2 said no weakness, no atrophy, then amended that to "well, maybe a little" on a second try; said I can some back in 4 mo and she'll reassess.
My rational brain says it's been like this for several months and isn't getting worse; also, there's obviously other issues with this hand, like a ganglion cyst; and, both carpal tunnel and hand arthritis run in my family, with multiple people having issues starting in their 40s.
My non-rational brain goes "see, this is how it starts...."
Worst rabbit hole ever. 0/10 would not recommend.
Yes, indeed. The definition of HA is two steps forward, one step back, I think -- I've spoken about this elsewhere, I don't think perfect should be the enemy of good for any of us
Just want to monkey off my back -- to notice body things and then just let them go. But I'm not able to do it perfectly yet.
I'm doing much better (FAR less emotional distress, ability to rationalize very present!) but you're right to still call me out
Hoping my posts help others see how the bad thinking goes;
I may not be able to find the way out of this particular HA paper bag, but maybe it helps someone else...
The "perfect" approach doesn't exist realistically. Just the "good enough" approach in my view.
You're doing fine, kyllikki. The need to research your way out of HA is a hard one to manage but you are aware of this and that's half the battle.
Thanks very much, Pulisa, it's kind of you. I'm just so sick and tired of it. Feel literally like a cat that keeps falling into a paper bag and struggling to get out, though....
Or maybe one of those cat memes where cats are scared by random vegetables
I just need to accept that life has vegetables in it sometimes and stop jumping 5 ft in the air when it does
(have no idea how I landed on cat memes as a metaphor but let's go with it :roflmao:)
"Purrfect" metaphor for when you're feline jumpy though!:D
Day made. I heartily give permission for any of my threads to devolve to cat puns!!
Hello Kyllikki!
thanks again for encouregment about my daughter! I apologise, but I’ve started reading your posts out of curiosity and found out that you suffer from twitching, which makes you think ALS, and pulsatile tinnitus.
Surprisingly, I’ve had both, so hopefully can reassure you a bit. First bout of twitching started in 2013 after work related stress. Went on for several months, then subsided. Surprisingly, I was not worried about ALS too much. Another bout - 2 years ago (one certain muscle was twitching, and also my tongue twitched!). Tongue twitching sounds like death sentence for us hypochondriacs :-) Surprise - it all subsided later on, I’m still here and kicking :-)
Any muscle can twitch, even toungue, stress aggrevates it, weakness can be percieved (had it in hand due to MS scare when it all started 11 years ago)
Pulsatile tinnitus - had it, was sent to MRi, all fine, still have it when I am stressed.
So I just like to repeat - stress/anxiety takes huge toll on our bodies. Various symptoms appear, but they are not always signalling organic illness. Nowadays I try to adopt wait and see approach - if symptom is here for a month, then perhaps I start/worrying
Younsound very determined to beat HA, and I have a feeling that you will succeed! Well, I think it can’t disappear forever, but it can be very well controlled. Sounds good enough for me, and I am sure you are on the right path :-)
Hello everyone, there's something I need to post here.
It is my one year Twitchiversary this week. If you read this thread and some others I have commented on, you can all see I have put myself through the wringer this past year.
I am therefore here to say something "out loud" to my HA:
I DO NOT have ALS/MND.
I DO have sciatica in my right leg.
I DO have seronegative/euthyroid Graves' disease.
I DO have arthritis/tendonitis in various joints.
I DO have HA.
All of these things together account for my symptoms over the past year.
I have done a full year of CBT, patiently waited my turn for (over 6 months for some specialists!) for medical appointments, completed PT, worn my splints, and started an SSRI.
And you know what? Life is SO much better now.
But, I need to say it aloud for closure and to (I hope) encourage others who might be in the rabbit hole:
I DO NOT have ALS/MND.
Wishing every single person who might read this the absolute best, and sending huge thanks to everyone who talked sense at/to me. <3
You're an absolute inspiration to people on this forum, kylikki.
I'm so pleased that your life is so much better now that you've thrown off the HA shackles.
Fab post.
Well done for all your hard work & thank you for your posts.
Thank you both. I want to say that it's largely your contributions to other (ahem, long term :) ) posters that have led to me realizing that a BIG step forward in my HA would be to publicly say, out loud, "I do not have..." without feeling a tide of "I might jinx it!" or "But what if?!"
Because the truth is "right now" is all we've got, and right now, I can do every single thing I want to do, daily -- that's been my reality for a full YEAR -- and that's not the reality of people with ALS/MND. So I owe it to myself (past, present, and future!) to stop living in negative fantasy land, by flat out saying "no" to the idea. So that's what led to my post.
I won't lie, I had a flare of anxiety right after I posted it -- I'm also having a stressful week overall -- and I get the heebie-jeebies just typing the "I might jinx it!" or "But what if?!" parts, because they are still SO seductive to my OCD brain. But they're no more "real" than "I might get promoted!" or "But what if I have a good hair day tomorrow?!" ...neither of which I think about on a daily basis.:roflmao:
Anyway, if I -- a person who literally spent hours a day for waaaay too many days staring at her tongue in the mirror during the past year, or poking at twitching muscles -- can get past HA, then I really believe a lot of other people can, too. It's big and scary but we can do big scary things. <3
"Negative Fantasy Land"....A theme park for determined HA-ers but now very much past its sell-by date for you, kylikki! You've cancelled your subscription in order to make long term savings in terms of a better quality of life and freedom to actually live that life.
I DO NOT have ALS/MND.
I DO have sciatica in my right leg.
I DO have seronegative/euthyroid Graves' disease.
I DO have arthritis/tendonitis in various joints.
I DO have HA.
And you ARE freakin' AWESOME!!
Well done! :shades:
You're all the very best people I've never really "met" in real life. (And that goes triple for you, dear Jojo, if you see this <3 ...)
Anyway, I really do hope others read this thread in the future and realize you can twitch like a maniac, have actual muscle problems... and not have MND/ALS.
But I can't say enough for the "life values" work my therapist encouraged, which started from the premise of: "assume you're perfectly healthy TODAY but might not be TOMORROW. What matters most, today, right now? If you could choose to do an unlimited number of anythings, what would they be?" And I had to actually make that list, as a bullseye diagram.
Then we expanded to ""assume you're perfectly healthy this YEAR but might not be NEXT YEAR. What matters most...? Then ""assume ... this DECACDE...". It was illuminating. It threw a switch for me: Why on earth aren't I doing these things?! Some of them are so easy! So enjoyable!
I started therapy in October 2021 when it became clear my HA was out of control. The values exercise opened my eyes at the end of November. Did I still fixate? Worry? Have OCD moments? Oh, yes. yes yes yes. But with every passing month I was convincing myself, slowly, to do more of what I wanted -- and it was getting easier to do -- than letting my HA run the show. I had a setback in May, and that pushed me into trying an SSRI, though I waited until July because of a revolting eye infection followed by a even more hideous sinus infection (thanks, nursery germs!) Within days of starting a child dose I felt like someone had turned the sunshine back on in life, and it was extremely easy to say "Why on earth would I waste my time on this idea?!" But I really don't think the meds would have been half as effective without the therapy work first. For one thing, they also made me viscously nauseous until I discovered they're better taken at night.
I am definitely part of this community to stay, though, because you have all helped me change my life. The other day while cleaning out a closet in search of a mostly blank notebook (too lazy to go round to the store! :)) and I found one which unfortunately wasn't suitable because it had all sorts of nonsense in it including a list of diseases I was afraid of... and it was from 2009!! That's far too much of my life wasted. Do we all need to look after our health somewhat, yes. But HA turns me from a reasonable human who goes to the doctor's when something is really wrong or when routine check ups are recommended, to... well, Mr. K says I become like those people in crime dramas who have a wall of pictures tacked to corkboard and connected with bits of yarn :roflmao:
At some later point, I am going a symptom dump timeline here because I think it might be helpful to someone and is actually funny... But not tonight! I've better things to do!! Cheers!!
I would like to interrupt the usual worries on this sub forum to quickly say:
Still here.
Still twitching, just WAY less --
and whatever it is, it definitely wasn't/isn't ***, but rather, somethin tied to these three factors:
1. Stress and anxiety -- the more I have, the more I twitch and hyperfocus
2. Getting good sleep = less twitching, better brain health
3. Thyroid fluctuations -- for whatever reason, my body seems to want my thyroid numbers to be a bit higher than they were. I have gone back up in range, and feel MUCH better on muscle strength, twitching/buzzing, sleep quality, hunger, shakiness, anxiety, etc.
If you are reading this in a place of extreme anxiety, please re-read my whole thread and know this: The odds are *overwhelmingly* in your favor, and life CAN get much, much better once you address your HA.
All the best to you all!!
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