4 Tests we can have that offer proof of illness

[Allyson]

So often doctors tell us there is " no test for ME" - often going on to suggest that therefore it does not exist.

These are a tests that will tell us something positive to show as proof that all is not right.

1. POTS/OI testing - very few docs know how to do this properly ( in fct many have never even heard of it) but POTs now being tested for by many specialists - you do need to find a doc who is knowledgeable in it. Many with ME think they do not have it - but until you are actually tested you do not know for sure. Most docs will respect a report showing a 20mmHg drop in your systolic blood pressure on standing so this is one easy test to get in your file. [Just make sure the testing does not involve and old fashioned TTT - the 45 mins upright that make you faint and provide no real evidence - you need regular blood pressure measurements and upright time limited to 10 minute bursts. You also need to be rested at the start so it is a resting BP you are starting from.]


2. Blood Volume testing

Low blood volume is often cited as a symptom of ME but rarely tested for; again showing your doctor a form indicting you only have say 4.3 litres of blood in your body instead of the requisite 5-6 litres is some proof positive that something is seriously wrong.

3. Upright MRI showing reduced blood flow to the brain on standing due to blood pooling or low blood volume or both - these are becoming available now.

4. Beighton's score for hypermobility. Joint hypermobility is listed in the 2011 International Criteria but does not get much coverage. Many people who are hypermobile - any dancers, gymnasts, athletes with frequent injuries? - do not realise they are as they have always been like that. You can get a rough indication on-line but need to see an informed specialist to get an accurate score.


A

 

[heapsreal]

Nk function testing.
2 day in a row exercise test??
Rnase l

 

[SOC]

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

 

[Seven7]

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.

 

[heapsreal]

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.

yes, good if a neurologist tested and treated the poor sleep quality and lack of stage 4 sleep etc.

 

[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.

yes so true SOC - we have to do the footwork ourselves if we want a cure IMHO
or show this to your doc - I get the email of any nice docs I see if they are willing and send them useful stuff like this

This is wonderful - a clear,, accurate explanation of POTS and its symptoms. It is long but that is due to the amount of detail involved in understanding POTS which is an extremely complex condition.

Postural orthostatic tachycardic syndrome - as stated above very common symptom of ME

Please share widely

http://www.youtube.com/watch?v=faScrmgKcWg&feature=share

best regards,

Ally

 

[heapsreal]

One problem we have is that we have tests showing abnormalites but they overlap with other conditions or arent specific for cfs/me. Still takes a doc to be able to put these abnormal tests together with symptoms etc to make a diagnosis. The more abnormalities that get ticked off the more likely one has ME.

 

[peggy-sue]

I have suggested several things to my gp which would prove I'm ill. He has refused, point blank, to allow any of them.

I asked for an exercise test, (standard exercise bike with metabolic measurements) he said it "wasn't available".
I pointed out that it's a standard second year physiology practical class at uni., the equipment is readily available in the physiology department. He said I couldn't get access to it.

I asked for a haematocrit.
He got a haemoglobin done. He had the cheek to tell me "they are the same thing", which is a lie.
(I've even performed both tests in labs in my job.)
I didn't have the presence of mind to ask him if he'd say the same thing to somebody who had sickle cell anaemia.

 

[Allyson]

I have suggested several things to my gp which would prove I'm ill. He has refused, point blank, to allow any of them.

I asked for an exercise test, (standard exercise bike with metabolic measurements) he said it "wasn't available".
I pointed out that it's a standard second year physiology practical class at uni., the equipment is readily available in the physiology department. He said I couldn't get access to it.

I asked for a haematocrit.
He got a haemoglobin done. He had the cheek to tell me "they are the same thing", which is a lie.
(I've even performed both tests in labs in my job.)
I didn't have the presence of mind to ask him if he'd say the same thing to somebody who had sickle cell anaemia.

Shocking Peggy Sue- I would be looking for a new GP - and some specialist referrals


Ally

 

[peggy-sue]

I've tried every single gp in the practice, I've complained to the practice manager about their not taking ME seriously. I was assured they take it very seriously indeed.
Blank wall. I could change surgeries, but I don't expect another would be any different.

I told my gp about folk having some success with doxycycline (was it KDM? I took a copy of the paper in to show him.)

He grinned widely and said, (smugly) "You're allergic to that class of antibiotics. You can't have them."

 

[ahimsa]

1. POTS/OI testing - very few docs know how to do this properly

I agree with this first point. Doctors are often unfamiliar with Orthostatic Intolerance - all the different types, list of symptoms, how to test for it, and so on. That's probably one reason we have a PR forum section for Orthostatic Intolerance (see http://forums.phoenixrising.me/index.php?forums/problems-standing-orthostatic-intolerance-pots.7/ ).

But I'm quite confused by this next statement:

[Just make sure the testing does not involve an old fashioned TTT - the 45 mins upright that make you faint and provide no real evidence - you need regular blood pressure measurements and upright time limited to 10 minute bursts. You also need to be rested at the start so it is a resting BP you are starting from.]

I'm unclear what you mean here. For both of my Tilt Table Tests (1995, 2003) the doctor measured and recorded both my blood pressure (automatic blood pressure cuff) and heart rate (full ECG, actually, not just heart rate) during the whole test. There's a report of how my heart rate and blood pressure responded over the full period of the test. I would consider my TTT report "real evidence" of a problem. After all, the 2003 report was enough to win an ERISA LTD (long term disability) claim.

I don't think any doctor (not even way back in 1995 when I was first tested) would put a patient on a tilt table and then wait for 45 minutes, with no measurements taken, until the patient faints. I have never heard of such a thing. They are definitely measuring the patient during the whole time.

Some doctors may be better than others at picking up abnormalities in the recordings and so may stop the test earlier. And that ability improves with experts vs. doctors who don't know as much. But that's not the same as saying all doctors just wait until the patient faints.

I'm sure that certain types of measurements of the autonomic system, and the interpretation of different responses, have changed over the years. But even back in 1995 the original Johns Hopkins researchers explained that a patient could have an abnormal tilt table test result without fainting.

Perhaps you were confused by what some people on this forum have called "the poor man's tilt table test"? This is a term that was coined for when a patient, at home, tries to stand still and measure their own heart rate and blood pressure. It's not an official test done by a doctor or hospital.

I admit that I am out of date on tilt table tests since my last one was done 10 years ago. However, I wanted to correct this bit of misinformation that doctors would ever (even in the past) just put the patient on the table and wait for a faint without any measuring.

I think people should do some research on their own and then talk with the doctor who is going to do whatever autonomic testing is suggested, whether it's a tilt table test or some other testing. Please don't rely on any patient (not even me! or should I say, especially not me!!!) for information.

Go straight to the doctor and ask them how they do the test. And if you find a doctor who says that they put a patient on the tilt table and just wait for a faint, without doing any measurements, then I would be very interested to hear about it.

 

[Sushi]

I agree,ahimsa. My TTT had about 6 different sections to test various aspects of the autonomic nervous system function and my doctor (who is an autonomic specialist who himself has POTS) did not want us to faint--it is too stressful. He said to stop the test when I was feeling uncomfortable symptoms and he would get all the data he needed.

The actual tilt part was also in 2 segments to measure different things and throughout the test I had continuous BP and pulse readings and electrocardiogram. The longer tilt section could go up to 45 minutes to an hour depending on the results they were getting and how I was feeling. I stopped it at about 25 minutes because I was feeling so bad.

At that point my BP was 88/80 and the doctor had enough data to diagnose me with dysautonomia by 3 different accepted criteria. He also had lots of other data on the autonomic nervous system from the parts of the TTT where you blew into an instrument, used a hand grip at full force and read into a recorder and then, while they replayed your recording, you read the piece again, but out of sync with the recording. (Scrambles the autonomic system!)

Sushi

 

[Allyson]

I've tried every single gp in the practice, I've complained to the practice manager about their not taking ME seriously. I was assured they take it very seriously indeed.
Blank wall. I could change surgeries, but I don't expect another would be any different.
."

Yes this is a problem a lot of people have with their doctors Peggy-sue so you are not alone here.
There are other doctors in the world. My own knew very little about ME when I first went to h but the local ME/cfs society sent her out a kit which piqued her interest.
She has now become extremely interested - she gave me her email address and I send her interesting clips and articles.

Some specalists will now answer your email query as to whether they can help with your condition before you even see them.
You can also find a relevant FB site of which there are now hundreds and ask for people who live nearyou to recommend docs who are au fait with the issue you want checked out , eg POTS - of which many docs know next ot nothing.

FOr example there are POTS and dysautonomia sites galore on facebook now - some specific to country, some international where POTsies share info...likewise for EDS and ME/cfs.....so information is spreading quickly and good docs are recommended often. I am in touch with at least 10 000 people this way and I see the increasing importance POTs is taking as an issue to be diagnosed and treated in so many conditions, despite the lack of medical knowledge by a lot of doctors.
We do not have to put up with being ignored neglected and abused any longer. Patients are taking the power into their own hands - as they have ever right to. It is our taxes that pay for the university education and the public health system and we have every right to be treated.

Likewise for low blood volume - I now know of two people who have been tested and have found their blood volume to be dangerously low. Also a lot of people in Australia who thought they had ME/cfs are now getting Lyme diagnoses - though the medical profession actually denied it existed (and doctors were forbidden to treat it) in Australia until very recently.

So doctors are not gods , they are just people who have studied medicine...some more successfully than others, and some many years ago. It is not possible for any one person to keep current with all the changes and advances in all areas of medicine in the last few years. That is why doctors specialise .....and a specialist in one area will not be up with the latest in another.
If we are being ignored neglected and sometimes abused we have the right to seek the information for ourselves and find doctors who do know and will treat us. It is our life, we only have one.

It is now apparent that there is a genetic component to many forms of POTS so if not for yourself you may want to chase it up for children, nieces and nephews and grandchildren so their lives are not ruined as ours have been.

best regards,
Ally

 

[heapsreal]

You have to work out what your current gp is useful for and then stay at his level, some and maybe your gp might be helpful with treating symptoms like sleep, pain etc with medications he's familiar with. So just use him for these things. Other stuff outside the box look towards another doc or specialist etc. Many cfsers just do alot of their own research and try a few things on their own, but one has to be sure of what their doing.

 

[Allyson]

I've tried every single gp in the practice, I've complained to the practice manager about their not taking ME seriously. I was assured they take it very seriously indeed.
Blank wall. I could change surgeries, but I don't expect another would be any different.
quote]

Peggy sue you might find some help/support on this fb site - seem to be a few knowledgeable Brits there
Dr Grubb has a very good reputation for example

https://www.facebook.com/groups/75183049224/10151802354284225/?notif_t=like


A

 

[PhoenixBurger]

Allyson I could see every doctor in Miami looking at those tests and

1) Not knowing how to order them.

2) Not having a clue how to interpret them, nor the relevance of the results.

3) The patient going home with zero action items in response to them.

Such is the medical system today.

 

[alex3619]

Allyson I could see every doctor in Miami looking at those tests and

1) Not knowing how to order them.

2) Not having a clue how to interpret them, nor the relevance of the results.

3) The patient going home with zero action items in response to them.

Such is the medical system today.

... not to mention asking if you have the cash to pay for them as they are not covered by insurance?

 

[heapsreal]

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.

 

[Valentijn]

I don't think any doctor (not even way back in 1995 when I was first tested) would put a patient on a tilt table and then wait for 45 minutes, with no measurements taken, until the patient faints. I have never heard of such a thing. They are definitely measuring the patient during the whole time.

Limiting it to 10 minutes of being upright would also be quite silly. There are many different forms of OI, and the more common one in ME (Neurally Mediated Hypotension) can be delayed considerably after getting upright.

 

[Allyson]

Allyson I could see every doctor in Miami looking at those tests and

1) Not knowing how to order them.

2) Not having a clue how to interpret them, nor the relevance of the results.

3) The patient going home with zero action items in response to them.

Such is the medical system today.

well here is info from Cleveland clinic sho do some of them Phoenixburger

Blood Volume Testing

What is a blood volume test?


A blood volume test (also called a plasma volume test or a red cell mass test) is a nuclear lab procedure used to measure the volume (amount) of blood in the body. The test also measures the volume of plasma and of red cells in the blood.



　


A blood volume test can be used in the diagnosis of these conditions:
Hypovolemia (low blood volume)
Hypervolemia (high blood volume)
Anemia (low red cell volume)
Polycythemia (high red cell volume)

A blood volume test also helps in the evaluation and treatment of these conditions:
Orthostatic hypotension (low blood pressure while upright)
Hypertension (high blood pressure)
Heart failure (decreased pumping power of the heart)
Shock

Medical conditions associated with acute blood loss