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Have any of you POTS sufferers had Vascular Disease Screening TESTS done?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Tired of being sick, Oct 31, 2014.

  1. Tired of being sick

    Tired of being sick Senior Member

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    I have a strong feeling that not very many of you had this done..

    Having Vascular Disease Screening done is extremely important for people who have POTS.

    I myself had cardiologists tell me there are no tests to check my entire circulatory system for underlying
    causes of blood flow problems,even though I was diagnosed in the ER with Monophasic blood flow circulation in my right superficial femoral artery using doppler ultrasound.

    I know for a fact that I have monophasic blood flow problems in at least my limbs,brain,and most likely
    my digestive system.
    POTS, even though it is secondary,POTS can be the most disabling condition in CFS/ME or any other disease that POTS is secondary to and I will prove it.

    Without adequate amounts of blood supplied to ALL of your muscle tissues,skeletal system, organs, especially your brain it WILL cause every CFS/ME symptom and then some..
    How do I know this?

    I have Livedo Reticularis on ALL of my limbs including my right leg in which Livedo Reticularis is a true indicator of underlying blood circulation problems
    My brain MRI impression read as follows:
    Probable chronic ischemic change in deep white matter
    Digestive problems such as bloating,nausea,IBS,and a never ending cycle of constapation,to regular to loose
    to diarrhea to water then back to constipation

    Monophasic blood flow is as bad as it gets for blood flow besides loosing all blood circulation.

    Triphasic blood flow circulation is the healthiest blood circulation
    Biphasic blood flow circulation is on the fence between healthy and poor blood circulation
    Monophasic blood flow circulation is on the fence between poorest and no blood circulation at all
    meaning that the only thing worse than monophasic blood flow is amputation of limbs,stroke,
    heart failure and organ failure..
    Monophasic blood flow causes large amounts of arthritis throughout all areas of the body that is affected by monophasic blood flow including arthritis in uncommon parts of the skeletal system like the sternum for example as I have arthritis in my sternum.
    I have tender spots over my entire body as well including my scalp..
    This is all blood flow problems in my book

    Blood is the giver and taker of life period.








    Trust me,I know the pain that losing blood supply causes as I have Keinbock's disease in my right
    wrist in which the lunate bones loose blood supply causing pain liken to a broken wrist.
    I know what a broken wrist feels like as I had both of mine broke at the same time.
    The left was a compound fracture and the right was fractured..

    Here is a link to a boat load of tests that can be done to find actual debilitating blood circulation problems:


    I as well as all of you who have POTS are now loaded with a ton of undeniable ammunition and armor.to place in front of all doctors who try to pull the wool over our eyes !!!
     
    Last edited: Nov 1, 2014
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  2. Tired of being sick

    Tired of being sick Senior Member

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    There are many causes of POTS besides CFS/ME

     
    Last edited: Nov 1, 2014
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  3. taniaaust1

    taniaaust1 Senior Member

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    No I havent had any vascular screening done (its hard to get tests done here) even thou I strongly suspect/ed that i had a vascular issue going on at one point eg leaky veins causing brusing which wouldnt go away under my skin. I had a bruise like patch for over a year.

    Ive no idea what Keinbock's disease is but I have had pain like you describe there before.

    I also got osteroarthritis early.. I had it in my lower back, mid back and neck in my xrays before I was even 40 years old. I sure I had it in a hip joint too (thou never had my hips scanned).
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I have not had any vascular tests done either (not sure if CT scan of my heart in the hospital is a vascular test?) but I also have constant unexplained bruises on my legs. These bruises started when I had mono two years ago and I even saw a hematologist at that time who was not concerned. Sometimes I have only 2-3 bruises but at one point I had 17. I asked my former and current cardiologist, my CFS doctor, my former naturopath, and everyone I could think of but no one could explain the bruises and my blood tests (platelets, PT, PTT, etc, are all normal.) Tania, did any doctor ever explain why you had the bruises?
     
  5. taniaaust1

    taniaaust1 Senior Member

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    No the doctors didnt... I got told I must of been leaning on that spot stopping it from healing (yeah right for over a year?).. while another doctor suggested it may be a fungal thing under my skin. While another said my shoe must be rubbing there, till I pointed out it was in a spot where my shoes didnt get too. Like per normal doctors really didnt have a clue.

    I also went throu a stage where I was getting bruises from very small bumps but a that time I had that other one that had stopped happening.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Tania, thanks and I was just curious. In my case, I do not get one bruise that stays for a year versus I get a bruise that lasts for weeks and goes away and then another and another, etc. They are always random and I have never banged into anything causing them. They are only on my calves or thighs and never on my arms or elsewhere. It is very strange and I have given up that anyone will find an answer.
     
  7. Revel

    Revel Senior Member

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    I get unexplained bruising also, mainly on my legs.

    During a medical examination the other year, my GP called the nurse in and began to ask me a series of strange questions. I suddenly realised that he thought that he was looking at a victim of domestic abuse!

    No investigation done though.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @Revel it's funny you say that b/c we were joking that I should say the bruises were b/c my husband beats me (he doesn't) but I guess you have to find the humor wherever you can!
     
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  9. Tired of being sick

    Tired of being sick Senior Member

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    As I suspected..

    This is a serious matter and should not be taken lightly
    because if you wait til you are bedridden 24/7/365 days a year the damage will be irreversible..
    It might already be too late for me as I'm not completely bedridden yet,my activity level is a 2.
    So push your doctors for these TESTS!

    I'm no doctor but I'm an expert when it comes to diagnosing myself..

    I diagnosed myself with all of these illnesses.
    CFS/ME/POTS/ADHD/CPS/Fibromyalgia and Sleep Apnea.

    It took me years of fighting with many upon many narcissistic doctors to get most of
    these illnesses confirmed.

    In fact since I have been turned away by many doctors since march 17th of this year 2014,
    when I presented them with my monophasic blood flow evidence from the ER.
    Along with My Brain MRI comparable to a 65 to 70 year old and I'm only 48.
    I'm very upset,sooo upset that when I finally do get the diagnosis of monophasic flow through
    all of my main arteries.
    ,I'm definitely going to sue every doctor who dismissed me along the way who will be responsible
    for the irreversible damage this is causing.
     
    Last edited: Nov 1, 2014
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @Tired of being sick I want to apologize that we got off topic in your thread and let you know that I absolutely agree with you that this is a serious matter that should not be taken lightly. I am so glad you are advocating for yourself and the information that you posted re: those tests is very valuable for everyone.
     
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  11. Tired of being sick

    Tired of being sick Senior Member

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    Kienbock's disease is exactly as I described except the lunate bone actually dies from loss of blood supply.
    However if caught early enough through surgery as I had you can still use your hand although your strength is only 33% of what it was before Kienbock's disease strikes..

    And yes I have advaced arthritus as well in my lower back in fact my back actually broke
    in march of this year from doing therapy in the shower that I've been doing for 30 plus years.

    The vertebrae cracked in 2 places while the disk exploded out into inner space of my body.

    Surgery will only make my back stiffness worse so it is not an option.

    I blame all of this on limited blood supply....
     
    Last edited: Nov 1, 2014
  12. Tired of being sick

    Tired of being sick Senior Member

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    The way I see it is all of these diseases/conditons have POTS as an invincible soldier,cyborg guarding their empire
    which is the control of your entire body through you immune/CNS systems feeding off of your cells.

    Once you kill this soldier it will be much easier to put the underlying disease in check or remission
     
    Last edited: Nov 1, 2014
  13. Revel

    Revel Senior Member

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    @Tired of being sick, for me, I view the symptoms I get from POTS as a protective mechanism.

    I don't know the root cause of my hypovolaemia and associated issues but I believe the tachycardia and collapse that I experience when vertical and active is my body's way of protecting vital organs, since I don't have enough blood to go around.

    I rarely lose consciousness when I collapse, but I am unable move or speak. I am assuming the blood has to be removed from large muscles and less vital areas and recirculated to the brain. Without POTS forcing me to the ground, surely more damage would occur?

    I hope one day to find the cause of my circulatory issues, but I don't see POTS as the bad guy, just an involuntary reaction to the real enemy.
     
  14. Tired of being sick

    Tired of being sick Senior Member

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    @Revel

    The problem with our body's protecting vital organs is our bodies have no way of protecting the brain when we are in the upright position,hence this is why we subconsciously lie down.

    If we were not to listen to our subconsciousness, out of stubbornness, our brains would rapidly progress in age
    a great deal more than they are by listening..

    Our subconsciousness's protectively force us to lie down in order to protect our brains.

    Our choices are to either lie down or collapse..
     
  15. Tired of being sick

    Tired of being sick Senior Member

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    I have a theory on how to raise our blood volumes..

    If you can bank your own blood for your own use for an upcoming surgery known as
    (autologous donation)

    Why couldn't you give an autologous donation to use for yourself as a transfusion after your system rebuilds it's blood supply from your original autologous donation in order to raise your system's normally low supply of blood volume?

    The standard one pint donation would be plenty
    If not you could give autologous donations until the transfusion would be adequate enough to return
    your own blood supply within the normal blood volume operating limits.

    Then all you would have to do is monitor your blood volume then repeat the above steps
    when necessary

    What am I missing here?.

    The way I see blood volume is to compare it with an automobile's coolant system.

    An automobile's coolant system. needs to precisely have 4 gallons of coolant and water combined.

    If this system is as much as 1 pint over or under its operating requirements you can expect
    the coolant system to either overheat from low volume or blow its gaskets and seals from
    too much volume.

    The human body's blood volume supply is remarkably comparable to an automobile's coolant system
    IMO of course..

    If you do not have enough blood volume, this can and will damage every part of the body that is not receiving adequate
    amounts of blood volume.

    If you have to much blood volume, this can rupture any vein,artery or organ that is receiving too much blood volume.
     
    Last edited: Nov 1, 2014
  16. zzz

    zzz Senior Member

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    PWME who have MRIs taken almost always have this. Dr. Cheney found this in all the MRIs he looked at. Probably the only reason some people with true ME don't have this in their MRI report is that some radiologists don't consider it significant enough to mention. Also, this didn't always show up on earlier, less precise MRI machines.

    From my MRI report:
    I don't have microvascular ischemic disease, nor do most PWME. I also never have had migraines. All that the radiologist is seeing is one or more UBOs, or unidentified bright objects. On an MRI, they show up as small circles of white light in the brain, with no detail. From this very limited information, the radiologist makes the diagnosis of what the UBO means.

    If radiologists actually knew anything about ME/CFS, and knew that that's what we had (CFS was listed as my primary diagnosis), they would diagnose these UBOs as being most likely related to our ME/CFS, and not microvascular ischemic disease, or any other sort of ischemic effect.

    See this post for more information on how the radiologist missed three distinct signs of ME/CFS that were present in my MRI.
    This is essentially the same as giving saline IVs, which temporarily return the blood volume to normal. The problem is that the body's regulating system is not working properly, and the "set point" for blood volume is set too low. So in your example, the blood transfusion would temporarily make you feel better, just like a saline IV, but in time, your body would gradually eliminate what it perceived as the excess water and salt from your blood, leaving you with the same blood volume as before. There would still be excess blood cells; these simply wouldn't be replaced when they died off, until your blood count returned to "normal".

    At one point, CFS researchers tried giving erythropoietin to PWME with low blood volume. Erythropoietin causes the generation of new red blood cells. It didn't help.
    The body's blood volume system is far more complex. Among other things, it is self-regulating, and it has various feedback loops that have so far defeated any straightforward ways of changing the volume. An automobile's coolant system is not self-adjusting in terms of volume, and has no feedback loops as a result.
     
    Last edited: Nov 1, 2014
  17. Gingergrrl

    Gingergrrl Senior Member

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    @zzz

    So does this mean that even if someone with ME/CFS had saline multiple times a week, it would never have a cumulative effect once the person stopped the saline?

    My cardio had mentioned Erythropoietin (not for me) but as something he had tried with other patients. I assume it could work in patients with low blood volume or autonomic issues who do not have ME/CFS?


    So is there no way to change blood volume or low BP outside of taking daily meds, drinking electrolyte drinks, and getting saline IV's? Or it is permanently screwed up forever with us? :aghhh: :eek: :cry: :nervous: :bang-head:
     
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  18. zzz

    zzz Senior Member

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    That's unfortunately correct. Saline treats only the symptoms of the problem.
    Low blood volume, yes. Autonomic issues, generally no. Autonomic issues still involve all the broken regulation mechanisms.
    Well, it's generally not that bad. From the Wikipedia page on POTS, specifically the Prognosis section:
    And of course, you could always try Dr. Goldstein's protocol. It either greatly reduces or eliminates autonomic dysfunction when it works, which is the vast majority of the time.
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    @zzz

    Bummer and that's what I figured. I guess there is no quick fix and the saline is just temporary (if it even works!)

    I guess I can have hope that my autonomic problems are all post-viral vs. life-long and I am hoping the Famvir reduces enough of the virus to fix the autonomic stuff but I know this may just be a dream.

    I bought the Goldstein book & companion guide (haven't opened them yet!) but hope to talk to you about them in the near future.
     
  20. alex3619

    alex3619 Senior Member

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    There are very good reasons not to do this. Its OK to do it for surgery for most, but if we already have low blood volume this will exacerbate it. Indeed some severe cases of ME can take months to recover from losing blood like this, and so surgery might have to be postponed and blood has a limited shelf life.

    If used to boost function then what we might wind up with is this. At first we feel better, and then we lose fluid, but have extra blood factors and cells in a depleted volume ... making our blood thick and prone to clots (after the citrate in the blood transfusion wears off and we have lost blood volume).

    Something like this would have to be researched carefully, with an eye to safety, before it could be considered an option.

    PS Just read @zzz post answering this, which I agree with.
     

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