4 Tests we can have that offer proof of illness

[Allyson]

And as for interpreting the results - pretty straightforward in a blood volume test - it is normal or it is low.
Low blood volume is common ME It is stated as such in the International Consensus Criteria of 2011 for ME.

I got the plasma volume testing done at Royal Melbourne hospital nuclear med dept.

Any one including GP can refer a patient to Nuclear med at RMH for the test
It was bulk billed so no cost involved.

(they call it a Red Cell Mass test but it is the same thing - aka plasma volume test as it measures both at once.)


I knew low blood volume was a symptom of ME/cfs /OI/POTS etc so i insisted on having it


Glad i had it now as it explains a lot and fits in with all my symptoms


I had been taking lots of fluids beforehand - oral eclectrolytes - so somehow the fluid is not getting into the blood stream - no one has ever known why we have low blood volume that i can find but it has been stated for many years that we do.

I did stop my B 12 injections and the licorice root a week or two before the test ( both increase blood volume).

Dr Paul Cheney might be the closest to it as he went into the cardiac side a lot. He has a heart transplant himself - last time i read his stuff 3 years ago.

........................................................................................

the results from my Red Cell Mass test which was done to measure blood volume
It was a fairly straightforward blood test over a couple of hours.

Apart from my BP dropping 20 mmHg on standing - when it was finally measured correctly - this is the first test showing anything wrong . ( edit - on and my MRI which has a some things on it that i need to get checked out)


I have low blood plasma volume - It is 2.48 litres - That is 30 mls per kg when the normal range is 40-50 mls per kg.
My whole blood volume was 4.33 litres (52 mls per kilo when normal range is 60-80 ml/kg).


............................................................
"The findings demonstrate reduced plasma volume consistent with "stress polycythemia" or dehydration."
(The polycythemia was ruled out by the haematologist.
They instruct you what to eat and drink pre-test so it's not normal dehydration.)

Whole blood volume is 4.33 l itres (52 mls per kilo when normal range is 60-80 ml/kg).
Plasma volume is 2.48 litres (30 mls per kg.............. normal range is 40-50 mls per kg).


A

 

[Allyson]

people who can afford it and show there useful i suppose are trail blazers for us poor ones. Maybe down the track it can be covered for us once its shown how useful they are.

'''


All my testing has been done for free under medicare @Heaps and Alex - I have never paid a cent


cheers

Ally

 

[Allyson]

I also suggest sleep study ASK for attention to how is your stage 4 sleep and others. Even though mine was terrible, I had to point it out. Some sleep doctors only look for sleep apnea and known disorders.

I had a sleep study done yes Inester7 an they did only look at sleep apnea which was indeed a waste of time for me

I should have asked fo them to look ate stage 4 sleep - got a follow up apt soon will aks them then\
was annoyed because when I could not sleep at all they t me to take a sleeping pill which I did ad then slept til 6 am

but they did not write that on my report - they wrote - slept well a night - as though I was inventing my insomnia!!


Ally

 

[heapsreal]

'''


All my testing has been done for free under medicare @Heaps and Alex - I have never paid a cent


cheers

Ally

same so far but then i havent had anything to out of the box. One needs to ask the doc to make sure to bulk bill.

 

[Allyson]

I would not have been able to get my PCP to order any of those tests. I bet I'm not the only one.

here is info form Cleveland Clinic soc

BLOOD VOLUME MEASURMENT - FREE EASY BLOOD TEST


BLOOD VOLUME MEASUREMENT TEST

have you had your blood volume measured?

this is important for all of us as it it some positive proof of our illness

Print it off and take it to your GP and /or or specialist

I have had this done in Australia at ROYAL Melbourne Hospital where it is FREE - bulk billed

My blood volume was very low - 4.33 litres intead of 5 litres.

I drink LOTS of electrolytes every day so they evidently do not fix it

A MAJOR hospital wil be needed to do this simple non-invasive test - the blood volume test though as it need a nuclear medicine department.

More info on the test here

http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx



Austin Hospitl Melourne also does this test I am just told - as does Rroyal Melbourne hospital


Please share widely!

This may be the most important test we ever have - in addition to the fatigue and crashes that low blood volume causes there is also an increased risk of embolis...stroke ..heart attack with low blood volume too.


A

 

[peggy-sue]

Thank-you so much for the help and links - I don't "do" facebook, though. It's too scary and techie, not the sort of set-up I'm comfortable with.

I do try to keep away from my gp as much as possible. Sleep meds would be great, but with my addictive tendencies, I've not been given anything but amitriptyline (which I couldn't tolerate).
(I must investigate californian poppy ).

All the tests that would prove abnormailties are non-standard, I simply wouldn't be allowed them.

 

[Allyson]

Thank-you so much for the help and links - I don't "do" facebook, though. It's too scary and techie, not the sort of set-up I'm comfortable with.

I do try to keep away from my gp as much as possible. Sleep meds would be great, but with my addictive tendencies, I've not been given anything but amitriptyline (which I couldn't tolerate).
(I must investigate californian poppy ).

All the tests that would prove abnormailties are non-standard, I simply wouldn't be allowed them.

FB is no different form the forum really Peggy sue so you are missing out on lots of great new info ta tis being shared there now
you just need an email account as you do for a forum

POTS testing would surely be standard? and a lot of it you can actually do yourself

details - and some testing places for US readers in this most informative link on u tube - fb not needed to see it

(Amazing how similar the POTS symptoms are to ME too BTW)

cheers

Ally







　

 

[peggy-sue]

But FB is somewhere you sort of set up on your own, as in; "Here I am, this is a picture of me, this is a picture of my cat, my interests are such and such..." then sit back and wait for complete strangers to ask to be your "friend" if they like your cat enough! It's all a bit "eeeeek" for me.

I like somewhere you pop on to find somebody asking a question about something you both have an interest in and can start talking about.

I do use a computer and the internet, but our system is a cobbled together ancient great big desk top one that can't cope with updates, I can't find anything I store away on it. I don't use a mobile phone.
I'm really not at all techie!

 

[Allyson]

NO peggy-sue you can make I what you want it - just think of your profile as it is on here and fb is one big forum - you choose which pages you join - you do not need any friends at all - that is what kids and people wanting social stuff use it for but you can use it however you like.

you can choose just to use it to obtain and share info and articles if you like. It is very handy and much better than a forum format for some things. Forums are better for storing info that you can re- access later though.

Trust me - info is spreading much faster there than it does on the forums now.

Cheers,
Ally

 

[peggy-sue]

"big brother" is watching, you know!
I do kind of like my "anonymity" on forums - although I am consistently peggy-sue for ME stuff and I'm quite happy to be known that way, (until I meet somebody I do want to get to know a lot better and in "reality".)
Currently, very little appears if my real name is googled. I want to keep it that way.

 

[Allyson]

"big brother" is watching, you know!
I do kind of like my "anonymity" on forums - although I am consistently peggy-sue for ME stuff and I'm quite happy to be known that way, (until I meet somebody I do want to get to know a lot better and in "reality".)
Currently, very little appears if my real name is googled. I want to keep it that way.

There are hundreds of people on fb whose "real" names seem to be two first names or the names of a disease , nicknames, nonsense names etc etc. If you get my drift Peggy-sue.

BTW the Beighton score is a test that is totally free to do and can be done in the comfort of your own home.

It is very enlightening to peruse the POTs fb pages...where they complain of an interesting array of symptoms such as debilitating "fatigue" unrelieved by rest, exertional dyspnoea, photophobia, hyperacousia, IBS, reflux, bloating, dysbiosis, gastroparesis, nausea, sleep issues, muscle weakness, muscle aches and pains, joint pain, exercise intolerance, post-exertional malaise, dizziness, brain fog, easy bruising and bleeding, loss or thermal regulation, joint hypermobility, polydipsia, polyuria etc. (More episodes of complete syncope there though)..... Not so different on the fibro pages except they call brain fog 'fibro fog' and seem to have more pain issues, nor from the EDS pages where the same symptoms appear but with somewhat more mention of migraine and joint hypermobility and its management......


Ally

 

[SOC]

here is info form Cleveland Clinic soc

BLOOD VOLUME MEASURMENT - FREE EASY BLOOD TEST


BLOOD VOLUME MEASUREMENT TEST

Here's a link without need to go through FB. http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx


This would not be a free test in the US. In fact, from the description, I imagine it would be quite pricey. Because it is not recommended by the CDC as a legitimate test for "CFS" (as our medical system insists on calling our illness), most of our insurance companies would not pay for it.

It's a bit of a catch-22 here. If you don't already have symptoms the GP is concerned about, s/he has a hard time justifying ordering the test needed to show there is something to be concerned about. The insurance companies won't pay for "unnecessary" tests. Who decides what's necessary? Some unholy alliance of your doc and the insurance company is the judge and jury ... unless the CDC is willing to list the test as necessary for your illness. Most GPs are far too wimpy to argue with insurance companies for us.

Now if I was experiencing syncope, which I haven't, I might have been able to get a blood volume test. Many of us don't faint, so routine blood volume testing is not likely for people with ME/CFS in the US, even if it should be.

 

[Allyson]

Here's a link without need to go through FB. http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx


This would not be a free test in the US. In fact, from the description, I imagine it would be quite pricey. Because it is not recommended by the CDC as a legitimate test for "CFS" (as our medical system insists on calling our illness), most of our insurance companies would not pay for it.

It's a bit of a catch-22 here. If you don't already have symptoms the GP is concerned about, s/he has a hard time justifying ordering the test needed to show there is something to be concerned about. The insurance companies won't pay for "unnecessary" tests. Who decides what's necessary? Some unholy alliance of your doc and the insurance company is the judge and jury ... unless the CDC is willing to list the test as necessary for your illness. Most GPs are far too wimpy to argue with insurance companies for us.

Now if I was experiencing syncope, which I haven't, I might have been able to get a blood volume test. Many of us don't faint, so routine blood volume testing is not likely for people with ME/CFS in the US, even if it should be.

Thanks indeed for that link SOC - I notice they have online chat and phone no there so it would b e easy to contact them to ask the cost and other details.

Many of us don't have syncope but have pre- syncope as Dr Cheney noted - we compensate by some mechanism to avoid it....

Low blood volume is a common symptom if ME - well it is often stated but until now I have not been able to find the test for it so I am glad Cleveland clinic are doing it.

For those in Australia the Austin hospital Melbourne is also doing the blood volume test - plasma volume or RED cell mass test - free with a GP referral.

If anyone knows of other places offering it that would be great to hear too please.

BTW the Beighton's score is free to do in the privacy of your own home - as is a poor person's test for POTS/OI if you have or have access to a blood pressure monitor.

Cheers and thanks again Soc

Ally

 

[WillowJ]

if you have a good doctor, doing the poor man's tilt table test at home and showing the results to your doctor might help them make the case for autonomic testing being 'medically necessary'. If you have or can buy a blood pressure cuff (available on the internet to the public), you can also log your blood pressure at home and bring it to your doctor.

I suspect none of the million times a medical assistant has taken my bp and told me "you have a weak pulse" that this hasn't gone in my chart. Maybe I should ask them to write it down?

 

[Sushi]

In the US, the big pharmacy chains usually have a rebate special on one or the other of the big brand BP machines. I got one with a manual pump up (prefer that) and a digital read with memory, for very little (under $20) at CVS.

The memory allows you to take the machine in to your doc and he can scroll through the memory (time stamped) to get an accurate picture.

Sushi

 

[Allyson]

In the US, the big pharmacy chains usually have a rebate special on one or the other of the big brand BP machines. I got one with a manual pump up (prefer that) and a digital read with memory, for very little (under $20) at CVS.

The memory allows you to take the machine in to your doc and he can scroll through the memory (time stamped) to get an accurate picture.

Sushi

Thanks for that Sushi -
interesting and helpful;

I note the POTsies all seem to have them are posting screen shots of their readings often on the POTS/OI facebook pages.


Often make for startling viewing with pulses sometimes going up to 190 and higher.

My pulse did not go up 30 points on testing at the hospital BP clinic so far but it has once at home - where I suspect you get a true resting pulse. It went from 68 lying to 100 standing - immediate reading after standing , so less than one minute. (Cool autumn weather, unheated house.)

Another time it did not do that.

Another time it did not do that.I have not researched the BP monitors at all but I have heard the wrist ones are not as accurate for BP measurement and I could well believe that to be true.

I should imagine a query on a POTS fb page would elicit informed responses as they seem very knowledgeable about their condition. (Interesting too that I have seen fibro and "cfs" listed as symptom of POTS.)



Cheers,

Ally

 

[Allyson]

if you have a good doctor, doing the poor man's tilt table test at home and showing the results to your doctor might help them make the case for autonomic testing being 'medically necessary'. If you have or can buy a blood pressure cuff (available on the internet to the public), you can also log your blood pressure at home and bring it to your doctor.

I suspect none of the million times a medical assistant has taken my bp and told me "you have a weak pulse" that this hasn't gone in my chart. Maybe I should ask them to write it down?

Yes interesting indeed Willow, thanks.

And yes if you record your own aberrant measurements as Sushi wisely indicated that is some good evidence - with a machine that records them or by taking photos on your phone/camera

There are many reasons why testing is less likely to be accurate in the clinic unless you are really settled and rested before the tests begin.

SO far I know of three people who have had their blood volume tested and all have been significantly low - mine was 4,33 litres in stead of 5- 6 litres! (Still nothing has been done about it.)


SO for all Aussies out there - it is free with a GP referral, think of getting it done and please do post places that do the Plasma volume ( Red Cell count) testing - so far I know of the Austin Hospital Melbourne and the Royal Melbourne Hospital and somewhere in NSW - not sure where that is - would guess Sydney.



Ally

 

[Allyson]

same so far but then i havent had anything to out of the box. One needs to ask the doc to make sure to bulk bill.

SO someone in Melbourne just told her GP about the blood volume testing and said it was a test for a usual symptom of ME/cfs and her doc had no hesitation in referring her for the test at the Austin Hospital where it is free - bulk-billed.

She may have taken the Cleveland clinic info printout to show the GP. ( Does any one know if Mayo clinic does the testing please?)

We often complain about being ignored or sidelined by some in the medical system - here is a chance to get out and get counted.!

Best,

Ally

 

[heapsreal]

I know some docs dont like it when patients bring in studies etc or say they read something on the net, but hey if they arent doing their job then people are going to loook for answers themselves. There are some docs who appreciate getting this info as they dont get alot of time to research this illness or any illness for that matter.

 

[roxie60]

There are hundreds of people on fb whose "real" names seem to be two first names or the names of a disease , nicknames, nonsense names etc etc. If you get my drift Peggy-sue.

BTW the Beighton score is a test that is totally free to do and can be done in the comfort of your own home.

It is very enlightening to peruse the POTs fb pages...where they complain of an interesting array of symptoms such as debilitating "fatigue" unrelieved by rest, exertional dyspnoea, photophobia, hyperacousia, IBS, reflux, bloating, dysbiosis, gastroparesis, nausea, sleep issues, muscle weakness, muscle aches and pains, joint pain, exercise intolerance, post-exertional malaise, dizziness, brain fog, easy bruising and bleeding, loss or thermal regulation, joint hypermobility, polydipsia, polyuria etc. (More episodes of complete syncope there though)..... Not so different on the fibro pages except they call brain fog 'fibro fog' and seem to have more pain issues, nor from the EDS pages where the same symptoms appear but with somewhat more mention of migraine and joint hypermobility and its management......


Ally

Its all just somataform disorder according to IME Drs....nothing real going on here....all in your heads....move along with your lives