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Thread: Hallucinations when I close my eyes to sleep....

  1. #21
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    Quote Originally Posted by agate View Post
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    HWO, you say:



    I wonder if you might have bee experiencing what the experts call loss of proprioceptive sense? I neglected to mention that when I was having so many problems with electric-shock sensations plus all-over warmth (and a feeling that things were spinning, but not so severely as to be real vertigo), I also didn't know where my arms or legs were unless I looked at them. That is loss of proprioceptive sensation, I found out later.

    I still have it and am thoroughly used to it now. Sometimes it takes odd forms. I used to look at my arm and find it in a very odd position, going every which way, and I never knew it was doing that until I looked at it.

    If you were having that loss of proprioception, you might have felt that you were a piece of celery, it seems to me. It's hard to perceive yourself at all in that state.
    Good point agate. I have loss of proprioception from Cerebral Palsy and have to look at my arms and legs as part of my motor planning. I have also had sensations of things moving when they are not. I'm sorry you get spinning sensations!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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  3. #22

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    Hi All,

    Yes, it might have essentially been loss of proprioception due to inflammation? On the positive side, it did not happen last night - I slept relatively normally - waking up at some point with some tingling/numbess issue but no strange out of body or detached types of thoughts.....a relief....

    In general, better today - dizzy/light headed, a little nauseous, but was able to push through it and complete 2 mile hike today, regardless.

    On the MRI topic, wrote to my PCP about the 3.0T MRI. She didn't want to deal - said to take it up with the neuro, so now, I have to wait until he's back on 6/6.

    I was thinking....I am 53....very first symptom started at 28. I actually don't remember when I had the first MRI - first one was brain alone, neurologist likely humoring me. I was maybe 29 or 30? Second was maybe 6 mos. or a year later, same neurologist taking me slightly more seriously - brain & c-spine, this time with contrast...although the contrast missed the vein and ended up in a ball in my arm - something I didn't notice until after the MRI. Both of these MRIs probably happened when I was early 30's. I have the scans at my "other home" and will retrieve them next time I'm there to get exact dates. Anyway, the 3rd MRI was maybe mid 30's - brain & c-spine with gad, and this time they got it in the vein. All MRIs negative. No lesions. But....at the time, symptoms were numbness and dizziness, chest pressure (in retrospect, MS hug type of symptom), annoying and uncomfortable, came and went. In that period of time - span of a few years - seems like nothing worsened much - the symptoms came and went but did not seem to disappear for long periods - maybe a year at most?

    Then in my late 30's, this stuff vanished, seemingly entirely....no explanation....I was going to take a trip overseas and went on a weight loss effort....but this was actually after the symptoms had largely disappeared....so this is why I can't attribute my weight loss to any remission, but at the same time, maybe the long length of the remission was due to weight loss and changing eating habits (nothing too rigid in my diet at the time, mostly avoiding saturated fat and cutting calories) and exercising in a fairly dramatic way? It makes me wonder since I had 15 years symptom free where I entirely forgot about these symptoms and chalked them up to a fluke - hormone imbalance, metabolic disorder, etc.

    But here we are again....

    I guess one question that may go through the head of a neuro is what are the chances I could have MS and a negative MRI 25 years after my first symptom and maybe around 20 years after my first MRI, even on a 1.5T? One would think something would show? I kind of see their point on this. I wonder if there are statistics on this?

    If this is MS, it sure has been insidious....and I suppose that's good as they may even call it mild or benign....which is great until it's not...

    Thanks again for your support,

    HWO

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  5. #23
    Distinguished Community Member Sunshine's Avatar
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    It took 18 years for my brain lesions to show. And it was on a 3T. About 4 years ago the MRI center scheduled me to do the 3T and then at the last minute had double booked it and put me on a 1.5T. I wishe I hadn’t gone along with it. IT was 2 more years until I got to do the 3T...they tried their trick again, and I walked out and rescheduled. They no longer have 1.5T at all— its just not that useful compared to 3T.

    If your MS is “mild”, with only a few bad lesions, the 1.5T may miss it still.
    Insist on it and wait. Once you do the 1.5T I guarantee they will not repeat it with a 3T for two years. Insurance wont pay for that kind of sequence...

    Unless you have a big tumor and need immediate MRI, its worth waiting.
    Last edited by Sunshine; 06-03-2019 at 01:07 PM.

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  7. #24

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    Quote Originally Posted by Sunshine View Post
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    It took 18 years for my brain lesions to show. And it was on a 3T. About 4 years ago the MRI center scheduled me to do the 3T and then at the last minute had double booked it and put me on a 1.5T. I wishe I hadn’t gone along with it. IT was 2 more years until I got to do the 3T...they tried their trick again, and I walked out and rescheduled. They no longer have 1.5T at all— its just not that useful compared to 3T.

    If your MS is “mild”, with only a few bad lesions, the 1.5T may miss it still.
    Insist on it and wait. Once you do the 1.5T I guarantee they will not repeat it with a 3T for two years. Insurance wont pay for that kind of sequence...

    Unless you have a big tumor and need immediate MRI, its worth waiting.
    Wow, Sunshine.....so, you had a diagnosis without lesions or are you just going back to when you had symptoms and then the first MRI? Were your symptoms mild?

    I will try to hold out for the 3.0T. There is also the option of changing insurance during open enrollment in the Fall....HMO was fine when I thought I was healthy....

    Thank you,

    HWO

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  9. #25
    Distinguished Community Member Howie's Avatar
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    Agate, should I post my MRI now? No, I better not, we don't want to start any MRI envy!

    Hootswithowls, this is just a running joke between Agate, and myself. Sorry, but I couldn't help myself!
    Evolution spans the Universe.

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  11. #26

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    Good news on my 3.0T request - the neuro emailed me back and said I had a good point, but I would need to figure out how to request the 3.0T machine as he wasn't able....? Not a warm fuzzy. Anyway, I called the MRI scheduler to see what I needed to do, and the good news is that they actually have a 3.0T machine in this location, so he was able to reschedule me for an opening on that machine the following day. So, my MRI is now going to be this coming Sunday afternoon, 6/9.

    Thanks for the encouragement on fighting the system, Sunshine!! I may not have done it without your encouragement, so thank you very much!! :-)

    HWO

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  13. #27
    Distinguished Community Member Lazarus's Avatar
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    After my first MRI ( in 1990) with dozens of bright shining lesions I have continued progressing. But there are rarely if ever any enhanced lesions. My neuro always told me not to make judgments of my MS based on the mri result..
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  15. #28
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Howie View Post
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    Agate, should I post my MRI now? No, I better not, we don't want to start any MRI envy!

    Hootswithowls, this is just a running joke between Agate, and myself. Sorry, but I couldn't help myself!
    I agree that now may not be the time. You wouldn't want it to be posted so often that it became common and old-hat.

    It should be one of those very rare treats for people here, IMO.
    i don't trip--I do random gravity checks.

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