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

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
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

Definition of ISCHEMIA
: deficient supply of blood to a body part (as the heart or brain) that is due to obstruction of the inflow of arterial blood

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:

Vascular Disease Screening and Prevention - New York ...
Carotid Duplex: This ultrasound procedure can detect carotid artery disease – blood clots, plaque build up, and other blood flow problems in the carotid arteries – early, before it causes any symptoms. When the disease is detected early vascular specialists can perform procedures that are effective in preventing stroke.

Aorta Ultrasound Scan: An aorta ultrasound exam can diagnose aneurysms that develop in the abdominal aorta, and is used to follow patients who have undergone procedures including aortic endograft and aortic open repair aneurysm.

Arterial Duplex Imaging: Using this high-frequency ultrasound test vascular specialists can visualize the arteries in the legs and the velocity and direction of blood flow in those arteries.

Treadmill Exercise Testing for Claudication: Doctors use treadmill testing to detect peripheral artery disease in patients who have pain in their lower limbs (claudication). During a treadmill test they can evaluate how exercise affects ankle-level blood pressure and analyze the relationship between claudication and vascular function.

Digital Photoplethysmography (PPG) with Thermal Measurement: Digital photoplethysmography (PPG) is an imaging test used to detect changes in blood flow at the microvascular level in the fingers and toes in people with Raynauds disease.

Ankle Brachial Index (ABI) with Pulse Volume Recordings (PVR): Doctors use these tests to measure blood flow and detect arterial blockages in the arms and legs. Together the tests help determine the presence, severity, and location of peripheral arterial occlusive disease.

Renal Artery Duplex Scanning: This imaging test evaluates blood-flow velocity and patterns in the aorta and renal arteries to help diagnose and locate blockages in the vessels and damage to the kidneys from chronically poor blood flow.

Dialysis Access Evaluation: This ultrasound exam helps vascular specialists map veins and determine which can be used for hemodialysis access.

Thoracic Outlet Obstruction Evaluation: Doctors use a combination of imaging studies including chest x rays, CT scans (in some cases with 3-dimensional reconstruction to show compression of the structures at the thoracic outlet), angiography and venography, MRI, ultrasonography, electromyography (EMG), and nerve conduction studies to diagnose thoracic outlets obstructions and determine the most effective treatment.

Vein Mapping for Arterial Bypass: Before performing surgery to perform a bypass, surgeons use preoperative ultrasound imaging to determine which vein segments might be used for bypass grafts.

Venous Ultrasound Scan of the Upper and Lower Extremities: This ultrasound exam shows blood flowing through blood vessels and can be used to detect deep vein thrombosis (DVT) and superficial vein thrombosis (SVT).

Diagnostic Tools and Technology
Diagnostic Angiography: Angiography is a type of imaging test that allows doctors to view blood vessels throughout the body and diagnose blockages, enlargements, clots, and malformations. An angiogram to study the arteries is called an arteriogram; one to study the veins is called a venogram.

CT Scans: A computed tomography (CT or CAT) scan is a noninvasive imaging test in which computers combine special x-ray images to produce cross-sectional images of internal organs, bone, soft tissue and blood vessels, allowing radiologists to diagnose vascular problems.

TeraRecon/Aquarius: This new technology allows vascular specialists who are planning an endovascular stent graft repair of an aortic aneurysm to create and analyze a three-dimensional reconstruction of a computed tomography angiogram. These images help ensure proper sizing and placement of the graft.

MRI: Magnetic resonance imaging (MRI) uses a powerful magnetic field, radio frequency pulses, and a computer to produce detailed pictures of organs, soft tissues, bone and virtually all other internal body structures. Detailed MR images allow physicians to better evaluate various parts of the body and certain diseases that may not be assessed adequately with other imaging methods such as x-ray, ultrasound or computed tomography (also called CT or CAT scanning).

Zeego: Specialists at NewYork-Presbyterian now use a new vascular imaging system (Zeego) that employs X-ray technology to image blood vessels. This angiography system allows doctors to move a C-shaped arm to almost any position around the patient, and to visualize internal organs from all sides.

Dyna CT: This new system allows vascular specialists to create CT-like images of soft tissue, and enables them to differentiate between normal and abnormal tissue to visualize, for example, brain tissue and intracranial hemorrhages.


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 !!!
 
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Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
http://www.nlm.nih.gov/medlineplus/adrenalglanddisorders.html
There are many causes of POTS besides CFS/ME

POTS Causes
Adrenal disorders, such as Addison's disease,

Anemia


Angiotensin II
Autoimmune disorders,




Cardiac atrophy
Cardiac disease
can cause POTS symptoms. Most physicians are quick to rule cardiac disease out.

Cardiac electrophysiologic property abnormalities .

Cervical stenosis .

Chemical exposure

Chiari malformation

Diabetes
Ehlers-Danlos Syndrome (EDS)
,

Epstein–Barr virus


Electrical injury
Gastric bypass surgery
Lesions
of the autonomic nervous system might be causing POTS in some individuals.
Lipodystrophy
Liver disease


Mast-cell activation disorders

Mitochondrial disease
Neuropathy


Nitric Oxide deficit

Norepinephrine transporter deficiency


The nutcracker phenomenon


Nutritional deficiencies
Other neurological conditions,
such as multiple sclerosis,
Parasites
Porphyrias


Syringomyelia

Tumors
Thyroid disease
Viruses
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

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.
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).
 

Gingergrrl

Senior Member
Messages
16,171
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.

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?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Tania, did any doctor ever explain why you had the bruises?

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.
 

Gingergrrl

Senior Member
Messages
16,171
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.
 

Revel

Senior Member
Messages
641
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.
 

Gingergrrl

Senior Member
Messages
16,171
@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!
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
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.
 
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Gingergrrl

Senior Member
Messages
16,171
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..

@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.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
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).
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....
 
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Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
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
 
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Revel

Senior Member
Messages
641
@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.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
@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..
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
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.
 
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zzz

Senior Member
Messages
675
Location
Oregon
My brain MRI impression read as follows:
Probable chronic ischemic change in deep white matter

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:
Hyperintense T2 and FLAIR signal foci are small in size and few in number. These are nonspecific but statistically most likely due to mild microvascular ischemic disease. Sequelae of migraine headaches could also have this appearance.

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.
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?.

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

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.
 
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Gingergrrl

Senior Member
Messages
16,171
@zzz

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".

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?

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.

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?


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.

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:
 

zzz

Senior Member
Messages
675
Location
Oregon
@zzzSo 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?

That's unfortunately correct. Saline treats only the symptoms of the problem.
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?

Low blood volume, yes. Autonomic issues, generally no. Autonomic issues still involve all the broken regulation mechanisms.
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:

Well, it's generally not that bad. From the Wikipedia page on POTS, specifically the Prognosis section:
Many POTS patients will see symptom improvement over the course of several years. Those who develop POTS in their early to mid teens during a period of rapid growth will most likely see complete symptom resolution in two to five years.[38] Patients with post-viral POTS will sometimes improve greatly or even see a full symptom resolution. Adults who develop POTS, especially women during or after pregnancy, usually see milder improvement and can be plagued with their condition for life.[citation needed] Rarely, a teenager who develops POTS will gradually worsen over time and have lifelong symptoms. Patients with secondary POTS as a consequence of Ehlers-Danlos Syndrome will also usually struggle with symptoms for life.[39] In some patients the only cure for POTS is time.

Many adult patients report a relapsing/remitting course characterised by periods of partial remission and occasional 'flare-ups' or exacerbations.

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.
 

Gingergrrl

Senior Member
Messages
16,171
@zzz

That's unfortunately correct. Saline treats only the symptoms of the problem.

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

Well, it's generally not that bad. From the Wikipedia page on POTS, specifically the Prognosis section:

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.

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.

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

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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?

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.