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Thread: saw the neurologist today...

  1. #1

    saw the neurologist today...

    I saw the neurogolist today - he's going to do another EMG (I failed the last one in my left leg) & an EEG - both on Tuesday. He's setting me up with a different surgeon - the first one said my condition "isn't bad enough for surgery yet" - how polite. The nurologist disagrees & is sending his reports (also said he'd call him) to the second guy becuase in his opinion, "surgery to release the nerve bundle & repeair the disks would improve your condition by at least 75%". He did say that the damage already done probably isn't reversible, and that my diabetic neuropathy is probably adding to my nerve issues, but at least someone believes me!
    He did say not to walk too much, since it causes pressure on the nerves & spine, but I was already doing that to prevent falling, so...
    But someone believed me! Why is it so hard to get medical people to listen? They hear but they don't listen a lot of the times. Even if the second opinion surgeon decides my problem isn't "bad enough yet" at least someone didn't just blow me off!

    Anyone else having a simular problem?

  2. #2
    never mind, it doesn't matter.

  3. #3
    it does matter! we all want to be listened to and not just brushed aside...really hope things get better for you! sending hugs and prayers, judy

  4. #4
    I have been fighting with doctors for 40 years, I know exactly what you mean.
    TH 12, 43 years post

  5. #5
    I have both an EMG (yep, another one) and an EEG - why the brain thing I don't know, unless it's to prove mine's dead! I took a 10 block crutch walk on Sunday - took me an hour. My 9yo was BORED! He did notice (and told me) that I was 'walking' on the outside of my dragging foot & now my right leg is dragging a bit too. So much for exercise!
    Last edited by Coleen; 10-01-2009 at 12:44 AM. Reason: spelling

  6. #6
    I had my first out patient SCI PT today - they're pissed that I've been shoved into limbo! Kim (my PT) is working on getting me into another surgeon ASAP, and told me flat out that I'm most likely not going to get much if any movement/feeling back in my legs considering how long the CE nerve bundle's been messed up & how quickly I'm losing my right leg now, too. She told me she's going to start working on getting me a lighter weight w/c, and is going to get an OT consult & have them fit me for leg braces so it'll all be in place when (ok, that was scary!) I need them. She also told me absolutly no walking & don't stand without making sure my legs can't buckle. How wonderful. She was blunt, but at least she told the truth (as she sees it now & for the possible future) instead of pussyfooting around my questions. Don't get me wrong - I love cats - have a big bunch of them
    I see her again on Friday, so we'll see what happens at that session. I learned proper zero weight bearing transfers today.

  7. #7
    I've been blown off lots! It is infuriating and MORTIFYING!

    It is the things aside from sci that tend to get me. The wheelchair rendered me fundamentally invalid, my gender denotes hysteria, my pain is dismissed out-of-hand, my refusal to allow permanent destruction of essential organs without research means I'm difficult. Due diligence done prior to surgery means you are a hypochondriac internet junkie. Insistence on a specialist to cut on your anus proves you consider yourself a special princess, too good for the general surgeon that stuck his fingers up your butt with neither permission or warning. When told "Hey, that hurt!", he said "Really? You can feel it?" and did it again!

    Yep, I'm a special princess and I want the colo-rectal surgeon, TYVM!

    When my research yields fruit, e.g. the fact that Graves patients with eye involvement are not candidates for the permanent destruction of thyroid by radiation, I'm a know-it-all. Should that compel me to look for another endocrinologist, glances askance abound. Ultimately I am sent back to fight with the first endo--We can't agree on a treatment plan, but at least she recognizes that I have a disease! (Graves) It felt good, after having doppler techs search for blood clots, infectious disease specialist rule out cellulitus, because the eye involvement is quite rare, so it must not be happening. umpteen scripts of antibiotics for an infection that didn't exist. Simple lab tests would have shown my thyroid off the charts, but that can't be, the swollen legs MUST be w/chair related! (NM the baseball sized thyroid prominently displayed atop my windpipe.

    I told the first endo that the internet was full of very ill people that were regretful they'd allowed destruction of their thyroids. "You know, the only people that post on the internet are the unhappy ones", says she. Ex-CUSE me???

    And omg, the time I had the rectal fistula? An abscess that eats its way, in tunnel form, from the rectal vault to the buttock surface, which I sit on. Constant infection, skin burned from feces exiting via my new a-hole, a giant boil on my butt that bursts just as I rolled into the doctor's office-5 times! "I don't see anything. Probably a pressure sore developing. Take these antibiotics and stay off it." Sweet relief! selling and infection gone! until the antbx were gone and the infxn immediately came back w/ the first bowel program. Then the pain, and swelling, and fever, and lying on my side again, to repeat the whole process, surrounded by increasing suspicion that I am not only a malingerer but also a w/chair bound exhibitionist that longs to display her bony bottom. 5 times. FINALLY, I roll in to the dr's. with a boil intact. It burst under the PA's eyes. "Ah-HAH!" He summons the doctor, who looks doubtfully at the oozing pus..."I don't know, seems unlikely. Fistulas are kind of rare..."

    Do I look like a person with good luck? Diagnose me, dammit!

    Oh, how I could rant! I'll spare you, but yes, I empathize and no, it's Not. Just. You!

  8. #8
    Yes! Mortifying! That's the word! And don't EVEN go to an ER unless you've got the broken bone protruding from the leg/arm/back etc. Anything else & you're drug seeking. I'm beginning to tolerate one leg full of pain (not to mention my back) and the other one starts going south on me! Medical people (a big part of them) can be so dense & maddening! Why repeat the EMG when one was JUST done? The only difference is I didn't feel anything at all this time in either leg, last time they only tested one leg. Yes! They know absolutly EVERYTHING about EVERYTHING & WE KNOW NOTHING! NOT!!!
    And why fix something when there's still a change to keep the paralysis to a minimum, when it's still repairable? No, let's wait until there's complete paraylsis, then it won't matter. It would matter if it was their family member!

  9. #9
    I've decided to stop seeking medical care for my problem.
    I'll see the VA, since they're taking over my care in 2 weeks, but there's not reason to see anyone else - I can't play their games - I'm not a game player. Thanks for your support, anyway.
    Rev Coleen
    Last edited by Coleen; 10-02-2009 at 01:40 PM. Reason: spelling

  10. #10
    I talked to the SCI PT person - Kim - and I'm going to go ahead & do PT & maybe OT, but since my injury "isn't bad enough yet" to fix, I guess the CES is going to irreversable. I'll have to wait until I see the VA, but I figure they'll make the same decision. I haven't gotten a second opinion yet - my PCP is slower than molasses sometimes - and the nerve tests aren't in yet, so even though I felt nothing, I'm sure they'll find the nerves are still working (DUH - they're on overtime!) but the muscles are weak, just like the first test showed. I bet if I had any other insurance besides Medicaid (I have to wait a year for my Medicare to kick in) the surgeon would've looked at my issues differently! Oh well, like I said, I see the VA in 2 weeks, then I'll have that insurance & medicaid & maybe something will got done. Problem is, I need to be moved up to a category 4 from 5 to get any help with braces, w/c, etc. I guess I'm stuck in limbo still.

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