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My Poor Man's Tilt Table Test Results!

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Karganeth, Feb 20, 2014.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't know anything about these specific problems but would just add that another advantage of MRI over CT is the lack of radiation exposure. CT gives quite a high dose. MRI doesn't involve any ionising radiation.

    Also worth adding that bone problems can be due to mineral loss, which many of us suffer from (they tend to be lost in urine). I have been supplementing bone minerals for over 3 years and my bones and teeth seem stronger now. It may be worth getting your blood mineral levels checked.
    Karganeth likes this.
  2. Karganeth

    Karganeth

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    @Sea

    Ouch sounds complicatingly painful. Must not be very easy to move around!? Did the level of damage you have take a very long period to occur or was it relatively quick? Yeah, like you said it's just mainly causing me a huge amount of discomfort but doesn't need any emergency appointment so will wait until I see my Gastro!

    @MeSci

    Well I dunno about the doctors but when they offer to send me for a scan and make mention of CT scan I try to persuade them to send me for an MRI instead if it is possible. Well as far as I've been made aware, my blood tests always come back in normal range. Normal doesn't necessarily mean good as it's my understanding that everybody is unique but o'well what do I know.

    I'd like to ask another question (I know too many of them). When I tilt my hip from side to side or put my fists just above my bottom and push forward to stretch, I get a sudden sensation that I'll leak urine and quickly have to stop my stretches to stop it from happening. Would this be another tick in the box for nerve interruption?

    Thanks everyone!
    Sea likes this.
  3. Sea

    Sea Senior Member

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    It has taken some time to accrue the damage - although a physio once told me I had the spine of a 103 year old when I was in my late twenties. (about 20 years ago) A car accident at 21 began the process and osteoarthritis set in early. It is painful and does limit my mobility somewhat (no more horse riding for me even if my health improves I'd say).

    It is however manageable most of the time. A painful flare lasting days can be created by something as simple as a misstep on uneven ground or a small hidden depression I step in unexpectedly when walking across grass. Thankfully nerves are not being continually compressed, only when in a flare, and that's when I get the bladder issues along with sciatica so I know they are related.

    I don't know the answer to your question about stretching or tilting your hips but it certainly sounds plausible that it is having an effect on nerves.
    Karganeth likes this.
  4. Karganeth

    Karganeth

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    Oh my god. If someone had told me that about my spine I'm not too sure how I'd have reacted in that situation, especially when in your early 20's. As I understand it, these 'disks' in the spine function similarly to a suspension system in a car? So every movement has to be with the utmost care and gentle stepping. Well all I can say is that I hope you continue to feel better. I'll update as and when news arrives on my part. Thanks again to everyone for being patient with me and answering my questions.
    Sea likes this.
  5. Karganeth

    Karganeth

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    Well today was the day I had the appointment with a Psychiatrist. Long story short, I have no major depression or generalized anxiety but she suggested (well she seemed pretty convinced) I had a condition that I can't remember the name of, but from what she said, it meant that 'I have an obsession with wanting to find things wrong with me'. Oh and that I've become fixated with wanting to be referred from specialist to specialist even when nothing is being found wrong with me.

    I can't quite understand why they keep telling me that they can't find anything wrong? Gastro are well aware of what I'm going through and are trying to find out the cause and Rheumatology have found damage and inflammation across my body so why do they keep insisting 'nothing can be found'? She said she'll recommend that my GP refers me to Neurology but won't force it upon him (her words), simply because it's what I want.

    She believes by referring me, it will help to calm my nerves and put some perspective on the subject. She then asked me what if the Neuro appointment comes out clear? I simply said that I'll continue to pursue help until somebody can explain these symptoms and help treat them because as of now, the way I am, I cannot function.

    I also said I don't want a referral that explicitly states 'please reassure this gentleman', because then the specialists don't even take you seriously. With every appointment I feel a little bit of my sanity wither away. If I'm ever to suffer from mental illness it'll be thanks to them. They're the ones driving me into that corner. I just don't know what to do anymore.
    Valentijn likes this.
  6. kyzcreig

    kyzcreig

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    Should point it back at them. "This is ridiculous. You're telling me I'm crazy, but ask yourself what's more crazy: that I can distinguish between what is real and what isn't OR that collective modern medicine has imperfect knowledge. I'm not making any assumptions but I've never been crazy before in my life and modern medicine has proven time and time again that they have imperfect knowledge or are just plain wrong. They drove the guy who said washing your hands might be a good idea to the nut house, where he died from sepsis because someone didn't wash their hands. The operative part of the word 'idiopathic' is idiot."
    Sidereal likes this.
  7. Allyson

    Allyson *****

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    not read all but if your HR jumps by 30 bpm that is POTS - and that causes the anxiety so it is medially based

    more later racing off sorry t I was not clear on which readings were lying and which standing

    have you checked out other EDS symptoms?

    http://forum.notcrazy.net/index.php?topic=9571.0


    more soon

    ALly
  8. SDSue

    SDSue Florida

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    POTS and magnesium:

    I recently saw a nephrologist who took my POTS/dysautonomia very seriously and has treated many dysautonomic patients. .

    I have been on magnesium as migraine prevention for years. While we wait for blood work to check my Mg levels, the nephrologist recommended that I discontinue the Mg as it is a known vascular dilator. (seems so obvious now) Definitely something for POTS people to think about.

    While GP's might be OK at screening general blood work for obvious abnormalities, it's amazing how the nephrologist could instantly analyze how different supplements and blood levels were interacting with one another and with my symptoms. After all, it's his job to keep those things balanced in his dialysis patients.

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