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

  1. #31
    Join Date
    Jun 2021
    Posts
    55

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

    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.

  2. #32
    Join Date
    Jun 2014
    Posts
    14,068

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

    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?

  3. #33
    Join Date
    Jun 2021
    Posts
    55

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

    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! If only, eh?]

  4. #34
    Join Date
    Jun 2014
    Posts
    14,068

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

    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"?

  5. #35
    Join Date
    Jun 2021
    Posts
    55

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

    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.

  6. #36
    Join Date
    Jun 2014
    Posts
    14,068

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

    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?

  7. #37
    Join Date
    Jun 2021
    Posts
    55

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

    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.
    Last edited by kyllikki; 12-10-21 at 13:52. Reason: typo

  8. #38
    Join Date
    Jun 2014
    Posts
    14,068

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

    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.

  9. #39
    Join Date
    Jun 2021
    Posts
    55

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

    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.

  10. #40
    Join Date
    May 2017
    Posts
    102

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

    I really hope youre 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. Im always here if you want a chat.

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