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Such a great post! Thanks!
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The dreaded D-word.....Denial! Anyone experiencing it?
- Thread starter ozikiwi
- Start date
Such a great post! Thanks!
taniaaust1
Senior Member
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- 13,054
- Location
- Sth Australia
I too was unwilling to accept that I had ME until I decided to have done some of the tests for abnormalities found in ME and then also found several of those. (in my case EEG abnormality commonly found in ME, Postive Rombergs test, hyperreflexia etc)
I too say dont jump to conclusions on having ME unless you have some tests backing it up.
With the heart arrthymia and due to thinking its CFS.. you probably should have a tilt table test done as something like POTS (postural orthostatic tachycardia syndrome) could be responsible for also heart arrthymia and making you feel more tired.
I too say dont jump to conclusions on having ME unless you have some tests backing it up.
With the heart arrthymia and due to thinking its CFS.. you probably should have a tilt table test done as something like POTS (postural orthostatic tachycardia syndrome) could be responsible for also heart arrthymia and making you feel more tired.
In Dunedin you should be able to get in touch with some of the doctors who worked on the Tapanui flu outbreak. Dr Snow has sadly passed away but Prof Campbell Murdoch may be able to advise you
http://www.odt.co.nz/regions/southland/116311/murdoch-be-town039s-next-gp
http://www.odt.co.nz/regions/southland/116311/murdoch-be-town039s-next-gp
- Messages
- 57
- Location
- New Zealand
To Tania and uk......you are both genius!
Thankyou both for your advice & research.....I'm getting straight onto it!
Thankyou both for your advice & research.....I'm getting straight onto it!
Hi ozikiwi, I’m a kiwi, I live in the middle, although compared to some countries NZ doctors generally have a better attitude to ME (but some are still appalling) the level of true knowledge on this illness in the medical profession in NZ is almost none existent, as it is in other countries.
The problem with biomarker tests is that by themselves they prove absolutely nothing, for the simple reason that all of the failed tests that are found in ME are found in lots of other conditions that have the same kind of symptom patterns. So you can have NK cell and mitochondrial dysfunction, failed Romberg tests, cortisol, tilt table tests and EEGs etc, etc, and all the symptoms attributed to ME, but actually have a completely different disease.
You can get almost all of these tests done for free in the NZ public health system, I have had most of them done, but because the NZ health system is such a mess it can be very hard to impossible to get them done, unless you have some very good luck.
Like I say by themselves these tests prove nothing except that you are sick and if you pay privately for them it can be a very expensive waste of money. They are only of use if all the other conditions that could cause these failed tests are ruled out as well, and the problem with this is that a lot of the other diseases that can cause these failed tests are outside the knowledge of the average GP, who often wouldn’t know these diseases if they fell over them. So you have to have a very good specialist or several specialists who can rule out all the other illnesses and leave you with ME as the only possibility.
The other problem with these biomarker tests is that a lot of the information on the net is incorrect and people believe that because they have failed them they have ME and stop looking for other possible illnesses, this can cost people there lives, these tests only mean you could have ME if every other condition that could cause these failed test results has been ruled out as well, and ME is the only option left. A lot of these tests are also not failed by every ME patient so you can get a negative result and still have ME, so from the point of getting any kind of accurate diagnosis these kinds of tests are far from perfect.
You say that you have had other illnesses excluded, but this is often not the case there are literally hundreds of illnesses or combination of illnesses that can cause these symptoms, often doctors have just excluded a few of the most obvious possibilities and then hand out a CFS diagnosis, I, seen over twenty five doctors, they all say that every things has been ruled out, and then I go to a new one and they always find some important tests that haven’t been done. Have you been to a cardiologist for your heart problems? Heart problems can cause serious fatigue and exhaustion after exertion.
All of this leaves the poor patient in a very difficult situation of not really knowing what is wrong with them, with a strong possibility that they have a treatable disease that has been missed, and trying to battle through a unhelpful medical system and read through vast amounts of information on the net on ME a lot of which is incorrect and often very dangerous.
Sorry I can’t recommend any ME doctors in NZ none of the ones that I have seen who claim to be knowledgeable have been any real help. However I see you live in Dunedin, there is a doctor down there called Dr Andrew Bowers, that I have read about, I have never seen anything about him and ME, but he is apparently a very good diagnostic specialist, he works in Dunedin hospital, he is apparently like a real world Dr House, without the bad attitude, don’t know if you know the TV show House, But this Dr Bowers is apparently like that, he and his team at Dunedin Hospital get sent all the patients that the rest of the doctors at the hospital can’t work out and they solve these cases. He specialises in working out all the hard to diagnose patients. Because of this he would probably be a very good doctor to see, if you want to find out if you have a different disease that’s not ME, or ME and something else.
He became quite famous a while back for solving a murder mystery where he found that a Dunedin psychiatrists had murdered his wife, everyone else thought see had died of natural causes, but Dr Bowers managed to very cleverly crack the case and prove that see had been murdered by her husband.
As I see it what we all need is an excellent diagnostic specialist to make sure that no other disease has been missed and that we don’t have ME and something else, and from my understanding you have one of the best if not the best Diagnostic specialist in NZ working near you. Unfortunately going through the public system you are very unlikely to get to see him and even if you do you will probably have to wait over six months. But if you can afford a few hundred dollars to see him privately he also works here http://www.mercyhospital.org.nz/specialists/dr-andrew-bowers and you should be able to get your GP to refer you to him.
If I lived where you do he would be the first doctor I would want to see, unfortunately despite what some sources on the net say, there are no biomarkers that by themselves that prove that someone has ME, all these failed tests are caused by a large number of other diseases. Personally I think the most important thing anyone can do is to try and make sure that all these other diseases are ruled out. Dr Hyde who is an Canadian ME specialist but also an excellent diagnostic specialist finds that about eighty percent of the patients he sees have undiagnosed known pathologies not ME despite being diagnosed by other doctors as having ME. So there is a high misdiagnosis rate with ME.
Hope this helps sorry there is no easy way of confirming a ME diagnosis and making sure that you don’t have some other missed disease, but from what I’ve read you do have a excellent diagnostic specialist in your area who may be a lot of help to you.
All the best
The problem with biomarker tests is that by themselves they prove absolutely nothing, for the simple reason that all of the failed tests that are found in ME are found in lots of other conditions that have the same kind of symptom patterns. So you can have NK cell and mitochondrial dysfunction, failed Romberg tests, cortisol, tilt table tests and EEGs etc, etc, and all the symptoms attributed to ME, but actually have a completely different disease.
You can get almost all of these tests done for free in the NZ public health system, I have had most of them done, but because the NZ health system is such a mess it can be very hard to impossible to get them done, unless you have some very good luck.
Like I say by themselves these tests prove nothing except that you are sick and if you pay privately for them it can be a very expensive waste of money. They are only of use if all the other conditions that could cause these failed tests are ruled out as well, and the problem with this is that a lot of the other diseases that can cause these failed tests are outside the knowledge of the average GP, who often wouldn’t know these diseases if they fell over them. So you have to have a very good specialist or several specialists who can rule out all the other illnesses and leave you with ME as the only possibility.
The other problem with these biomarker tests is that a lot of the information on the net is incorrect and people believe that because they have failed them they have ME and stop looking for other possible illnesses, this can cost people there lives, these tests only mean you could have ME if every other condition that could cause these failed test results has been ruled out as well, and ME is the only option left. A lot of these tests are also not failed by every ME patient so you can get a negative result and still have ME, so from the point of getting any kind of accurate diagnosis these kinds of tests are far from perfect.
You say that you have had other illnesses excluded, but this is often not the case there are literally hundreds of illnesses or combination of illnesses that can cause these symptoms, often doctors have just excluded a few of the most obvious possibilities and then hand out a CFS diagnosis, I, seen over twenty five doctors, they all say that every things has been ruled out, and then I go to a new one and they always find some important tests that haven’t been done. Have you been to a cardiologist for your heart problems? Heart problems can cause serious fatigue and exhaustion after exertion.
All of this leaves the poor patient in a very difficult situation of not really knowing what is wrong with them, with a strong possibility that they have a treatable disease that has been missed, and trying to battle through a unhelpful medical system and read through vast amounts of information on the net on ME a lot of which is incorrect and often very dangerous.
Sorry I can’t recommend any ME doctors in NZ none of the ones that I have seen who claim to be knowledgeable have been any real help. However I see you live in Dunedin, there is a doctor down there called Dr Andrew Bowers, that I have read about, I have never seen anything about him and ME, but he is apparently a very good diagnostic specialist, he works in Dunedin hospital, he is apparently like a real world Dr House, without the bad attitude, don’t know if you know the TV show House, But this Dr Bowers is apparently like that, he and his team at Dunedin Hospital get sent all the patients that the rest of the doctors at the hospital can’t work out and they solve these cases. He specialises in working out all the hard to diagnose patients. Because of this he would probably be a very good doctor to see, if you want to find out if you have a different disease that’s not ME, or ME and something else.
He became quite famous a while back for solving a murder mystery where he found that a Dunedin psychiatrists had murdered his wife, everyone else thought see had died of natural causes, but Dr Bowers managed to very cleverly crack the case and prove that see had been murdered by her husband.
As I see it what we all need is an excellent diagnostic specialist to make sure that no other disease has been missed and that we don’t have ME and something else, and from my understanding you have one of the best if not the best Diagnostic specialist in NZ working near you. Unfortunately going through the public system you are very unlikely to get to see him and even if you do you will probably have to wait over six months. But if you can afford a few hundred dollars to see him privately he also works here http://www.mercyhospital.org.nz/specialists/dr-andrew-bowers and you should be able to get your GP to refer you to him.
If I lived where you do he would be the first doctor I would want to see, unfortunately despite what some sources on the net say, there are no biomarkers that by themselves that prove that someone has ME, all these failed tests are caused by a large number of other diseases. Personally I think the most important thing anyone can do is to try and make sure that all these other diseases are ruled out. Dr Hyde who is an Canadian ME specialist but also an excellent diagnostic specialist finds that about eighty percent of the patients he sees have undiagnosed known pathologies not ME despite being diagnosed by other doctors as having ME. So there is a high misdiagnosis rate with ME.
Hope this helps sorry there is no easy way of confirming a ME diagnosis and making sure that you don’t have some other missed disease, but from what I’ve read you do have a excellent diagnostic specialist in your area who may be a lot of help to you.
All the best
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
Ric..
thou I do believe I have ME due to having so many of the known ME findings.. that dont stop me from being tested from anything which could still be possible. I wasnt at all implying tha, it seems you've assumed I was.. ..
it still stands that everything possible should be ruled out.
thou I do believe I have ME due to having so many of the known ME findings.. that dont stop me from being tested from anything which could still be possible. I wasnt at all implying tha, it seems you've assumed I was.. ..
it still stands that everything possible should be ruled out.
- Messages
- 16
I think it is natural to question things, especially when you are having a bit of a better day or week.
I am mostly in a place of acceptance. I accept that I am very unwell, and that I don't know what the future holds (but who does?) BUT I have not and I will not lose hope. Without hope, it is all too hard. And there is hope. People do recover! And many more that don't fully recover, improve greatly.
I have taken a different approach to many.
I am seeing a traditional chinese medicine dr, and have more or less 'left' the western medical system. I made this decision after seeing all sorts of specialists, getting the diagnosis of cfs/me and them wanting to refer me to a physchologist. Um.... NO. Especially since I am one of the lucky few who only gets mild anxiety and depression. It is very manageable for me.
I love my TCM doctor and I credit some of my recovery so far to him.
My other strategies are living within my energy envelope and living as 'cleanly' as possible. Organic food, low chemical house etc. And most recently gluten free.
Am I wildly off topic? lol.
Good luck, I hope you get to the bottom of things soon.
I am mostly in a place of acceptance. I accept that I am very unwell, and that I don't know what the future holds (but who does?) BUT I have not and I will not lose hope. Without hope, it is all too hard. And there is hope. People do recover! And many more that don't fully recover, improve greatly.
I have taken a different approach to many.
I am seeing a traditional chinese medicine dr, and have more or less 'left' the western medical system. I made this decision after seeing all sorts of specialists, getting the diagnosis of cfs/me and them wanting to refer me to a physchologist. Um.... NO. Especially since I am one of the lucky few who only gets mild anxiety and depression. It is very manageable for me.
I love my TCM doctor and I credit some of my recovery so far to him.
My other strategies are living within my energy envelope and living as 'cleanly' as possible. Organic food, low chemical house etc. And most recently gluten free.
Am I wildly off topic? lol.
Good luck, I hope you get to the bottom of things soon.
meandthecat
Senior Member
- Messages
- 206
- Location
- West country UK
Doubt is a rational response to a situation where there is insufficient data; doubt is real, doubt is good. If some of those entrusted with our care had the humility to doubt perhaps then medicine would not have polarized into the log-jam it is today. Doubt is what allows hope in.
I am lying here with norovirus and it's like going back 4 yrs to when I was really ill. What really scares me is going back, I couldn't do it again; so there is alot of doubt but I know my doctors for what they are, Jobsworths with the morals of a polecat, they prey on the vulnerable and seem more concerned with golf than my health and I know that I can do more to recover than they admit possible.
Doubt is my best friend., Oh and the information I get here.
I am lying here with norovirus and it's like going back 4 yrs to when I was really ill. What really scares me is going back, I couldn't do it again; so there is alot of doubt but I know my doctors for what they are, Jobsworths with the morals of a polecat, they prey on the vulnerable and seem more concerned with golf than my health and I know that I can do more to recover than they admit possible.
Doubt is my best friend., Oh and the information I get here.