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Thread: Did not want to join this club. And YES, I've read all the stickies!

  1. #41
    Join Date
    Jun 2021
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    256

    Re: Did not want to join this club. And YES, I've read all the stickies!

    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."

    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.

  2. #42
    Join Date
    Jun 2021
    Posts
    256

    Re: Did not want to join this club. And YES, I've read all the stickies!

    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.
    Last edited by kyllikki; 25-01-22 at 17:41. Reason: typo

  3. #43
    Join Date
    Jun 2014
    Posts
    16,747

    Re: Did not want to join this club. And YES, I've read all the stickies!

    "I looked it up"....

  4. #44
    Join Date
    Jun 2021
    Posts
    256

    Re: Did not want to join this club. And YES, I've read all the stickies!

    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...

  5. #45
    Join Date
    Jun 2014
    Posts
    16,747

    Re: Did not want to join this club. And YES, I've read all the stickies!

    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.

  6. #46
    Join Date
    Jun 2021
    Posts
    256

    Re: Did not want to join this club. And YES, I've read all the stickies!

    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 )

  7. #47
    Join Date
    Jun 2014
    Posts
    16,747

    Re: Did not want to join this club. And YES, I've read all the stickies!

    "Purrfect" metaphor for when you're feline jumpy though!

  8. #48
    Join Date
    Jun 2021
    Posts
    256

    Re: Did not want to join this club. And YES, I've read all the stickies!

    Day made. I heartily give permission for any of my threads to devolve to cat puns!!

  9. #49
    Join Date
    Sep 2011
    Posts
    126

    Re: Did not want to join this club. And YES, I've read all the stickies!

    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 :-)

  10. #50
    Join Date
    Jun 2021
    Posts
    256

    Re: Did not want to join this club. And YES, I've read all the stickies!

    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

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