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

  1. #11
    Join Date
    May 2008
    Posts
    1,810

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

    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.)

  2. #12

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

    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.

  3. #13
    Join Date
    Nov 2018
    Posts
    5,752

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

    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.
    __________________
    ************************************************** ********
    Sometimes, it's better to light a flamethrower than curse the darkness. - Terry Pratchett

  4. #14

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

    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?

  5. #15
    Join Date
    Nov 2018
    Posts
    5,752

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

    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.
    __________________
    ************************************************** ********
    Sometimes, it's better to light a flamethrower than curse the darkness. - Terry Pratchett

  6. #16

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

    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.

  7. #17
    Join Date
    Nov 2013
    Posts
    233

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

    K,

    Just PMed you.

    Lana

  8. #18
    Join Date
    May 2008
    Posts
    1,810

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

    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??

  9. #19
    Join Date
    May 2008
    Posts
    1,810

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

    The trouble with being bright- which I know you are - is you tend to believe your own bull****!

  10. #20
    Join Date
    Nov 2013
    Posts
    233

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

    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.

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