The 12th Invest in ME Research Conference June, 2017, Part 2
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Can someone please tell me if this sounds like OI?

Discussion in 'General ME/CFS Discussion' started by 2Cor.12:9, Sep 5, 2015.

  1. 2Cor.12:9

    2Cor.12:9

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    Hello. This doesn't sound like it fits the description of OI but I was hoping someone might shed some light on this before I see a new doctor.

    For several years I've experienced extreme weakness-jelly legs that begin a few seconds after standing from a sitting position. This never happens when I've been lying down. It happens more often when I get out of the car than when sitting upright at home or a restaurant - though it does happen there too.

    I never feel lightheaded or dizzy, but I do occasionally also have a pulsating whoosing in my ears when this happens. My legs feel like jelly to the point that I wonder if they'll give out. It only lasts 1-2 minutes and then I'm fine but it makes walking from the car to the store entry bothersome.

    I have lower back problems and wonder if this could be caused from that or maybe from a circulation problem.

    Any thoughts would be appreciated.

    Thanks!
     
  2. Eeyore

    Eeyore Senior Member

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    I have POTS and OI, positive tilt table testing, and a history of syncope and presyncope. I haven't experienced what you're describing at all (maybe the ear thing - not the legs - although I'm not sure that means anything).

    The problem could be circulatory. Is it bilateral (in both legs, and if so is it equal in both)? How long have you had it, how often do you experience it, and do the incidents cluster or are they random and widely spaced in time? Is it tied to exercise? Is it associated with prolonged immobility? Is standing still or walking easier?

    I'd be concerned with vascular insufficiency and would recommend you speak to a doctor about this and consider seeing a vascular surgeon for an evaluation (usually by ultrasound).
     
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  3. PatJ

    PatJ far and free I gaze

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    If your lower back problems are related to the spine then maybe some spinal nerves are being compressed for a short period when you stand. There may be more spinal twisting involved in getting out of a vehicle vs rising from a chair.
     
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  4. 2Cor.12:9

    2Cor.12:9

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    Thanks for your thoughts. Yes it does occur in both legs. There's not much rhyme or reason for when it happens. Sometimes it does and sometimes not. And doesn't seem to be related to how long I've been sitting - I can drive for hours with no problem, or go across town and have it happen.
    I've mentioned this to doctors before and they look dumbfounded. A vascular surgeon would be out of the question - I have no insurance -
     
  5. 2Cor.12:9

    2Cor.12:9

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    This has been my general feeling about it too. Not sure how that would relate to the pulse swooshing in my head. I also have neck problems. And I've got circulation problems with my feet (usually one foot) being freezing in the evening. Who knows? It's always something. Maybe my new rheumy can sort it out along with my list of other things.
    Thank you!
     
  6. Eeyore

    Eeyore Senior Member

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    Sorry about the insurance. Any trained doc with an ultrasound could evaluate it in office in a short time - my doc uses vascular surgeons to evaluate venous insufficiency (not suggesting any actual surgery - just an eval!)

    Do you experience edema (swelling) in the legs at all? Do the legs change color? Have you had any loss of hair in the distal extremities (particularly lower - like near your ankles and low leg, or on the foot)?

    Has your doc looked at changes in heart rate and bp when you change position or on valsalva? Anything noted?

    When you say both legs, do you mean it can occur in either at any time, or when it occurs, it occurs in both at the same time?
     
  7. PatJ

    PatJ far and free I gaze

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    The spine relaxes and lengthens during the night, then slowly compresses when upright during the day. Have you noticed if it's more likely to happen later in the day when there would be more spinal compression?

    Maybe the wooshing in the ears comes from a sudden change in nerve signals from the lower body and a corresponding change in BP in response. But, it seems odd that you don't notice any dizzyness.
     
  8. Eeyore

    Eeyore Senior Member

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    I had a carotid doppler done and I had very high peak systolic velocities. No one knows why, the report just said "possible systemic or cardiac cause" - aka "we don't know why"
     
  9. 2Cor.12:9

    2Cor.12:9

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    No swelling. No change in color. No hair loss (except on my head! lol!) No doctor has every checked hr and position - but then, I've never made a big deal of this. Yes, both legs at the same time. Feels like my blood's been drained.
     
  10. Eeyore

    Eeyore Senior Member

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    It sounds circulatory to me, but I'm not a doctor - beyond that, all I can say is you should have doctor look at it, but I haven't experienced it and I don't think it's classic OI or POTS - but maybe it's just a manifestation I don't have.
     
  11. 2Cor.12:9

    2Cor.12:9

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    I think you're onto something - I was born with congenital Spondylolisthesis and have had lower back trouble off and on my whole life. So I just looked up symptoms of degenerative SpL (which at my age I'm sure I have) and it's pretty much as you described. The article also described some other spinal changes I've noticed. Guess it's time for an x-ray.
    "
    • Generally, patients do not have a lot of pain while sitting, because in the sitting position the spinal canal is more open. In the upright position, the spinal canal gets smaller, accentuating the stenosis and pinching the nerve roots in the canal.
    • Patients typically have tight hamstring muscles (the muscles in the back of the thigh) decreased flexibility in the lower back, and difficulty or pain with extension (arching the back backwards).
    • The nerve root pinching can lead to weakness in the legs, but true nerve root damage is rare. "
     
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  12. 2Cor.12:9

    2Cor.12:9

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    I think you're right Eeyore that it's probably not OI or POTS. I know I have circulatory problems too, but I'm really thinking it's my lower back. Thanks for all your great input! :)
     
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  13. Eeyore

    Eeyore Senior Member

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    I hope you and your doctor are able to figure it out. Good luck.
     
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