Why Can't we get the test in the UK for definate DX???

[johnny alpha]

they are doing an nmo test in france though
read it here:
http://www.edmus.org/src/proj/studies_nmo.html
and they are offering the NMOIGG test for any neurologist
details here:
http://www.edmus.org/src/proj/studies_nmoig.html
and downloadable documents here:
http://www.edmus.org/src/proj/studies_nmo_doc.html

_________________
one cannot discover new lands without first having thee courage to leave thee shore...we can go on....together!

[MoonlightD]

As a poster from the United States, I want to reiterate what a horrible injustice it is that the NMO-IgG test is so hard for those of you in the UK to get. Logistically, it should be quite simple. Of course there are smaller complicating factors, but the only big reason I can see for the difficulty is The Money.

As with all things, medical care costs money. In the case of the NMO test, the doctors and scientists who researched and developed it have to be compensated at a level appropriate to their high level of qualifications. (While they may love their professions, unless they’re independently wealthy, they’re not going to work for free. Ph.D.s don’t work cheap.) The technicians who perform the tests have to paid salary and benefits. There are overhead costs to run the facilities. The money has to come from somewhere.

I haven’t seen this hypothesis discussed here at Gayle’s Place or on the Transverse Myelitis Foundation’s Devic’s board. (I apologize if I’ve missed the thread—will someone please send me the link?) Citizens of the UK have socialized medicine. My theory is that the government health system isn’t willing to absorb the cost of setting up a testing center in the UK that meets the Mayo Clinic’s technical requirements and compensates Mayo at an appropriate level.

In the United States, medical care is a private enterprise. Most people who have medical insurance are enrolled in some program that is partially paid for by an employer of some family member, and partially by the employee. When they can get them, people who don’t have employer-provided insurance buy private policies. The government is involved only in Medicare, which enrolls senior citizens and the disabled, and Medicaid, which covers medical care for those who are too poor to pay for it themselves. But even Medicare recipients pay for their medical insurance premiums out of their government benefits. Because everyone ends up in a big “pool” of patients that spreads the risks and costs around, people with medical insurance pay less for doctors, procedures and hospitalizations than they would if they had to pay the whole cost privately.

As part of medical insurance—that people pay for—lab tests are provided, usually at some additional cost, called a co-payment. People without medical insurance pay the medical laboratory privately. The bottom line is that people pay for their care. In the case of the NMO test, the patient and the medical insurer pay the Mayo Clinic laboratory for the test.

So you can see that in the United States we most definitely DO NOT get the NMO test for free. (Please squelch that “free-test” rumor immediately!) Everybody pays for it somehow—whether through medical insurance or privately. (The only patients in the United States who are getting the test for free are those who are indigent and have all of their medical care paid for by the government.)

Since the Mayo laboratory is being paid appropriately for the test in the United States, they can run the program efficiently, with a reasonable turnaround time (my results took three weeks). (I’ve heard estimates of $300 to $350 USD, which is expensive but not outrageous. That’s less than the cost of an MRI, but people don’t seem to be complaining as much about the cost of an MRI.) But if my hypothesis is right, the UK’s socialized health system won’t pay Mayo appropriately, so there has been no agreement to set up the test there.

High-level, cutting edge technology cannot be run as a charity. Although the Mayo Clinic has a charitable foundation, it’s unrealistic to expect them to do the test for every NMO suspect in the UK for free. But if Bill Gates were to add NMO to his list of medical conditions that, like AIDS, need extra intervention, his foundation could buy a satellite laboratory from Mayo, set it up at the Walton Centre, and everyone in the UK could have their NMO test by St. Paddy’s Day.

[gayle]

Hi there Moonlight Lovely to meet you.
Maybe you are right it could be the money factor but the test is also being done in France at present under the edmus study( see post above yours).
This way you get your Neurologist to contact them.
They are studying NMO also as many countries are.

It is our understanding that the test has been helping Drs at the Mayo to understand NMO also, many of us in the UK have had our bloods with them for a few years now me included.
But this is down to the Walton Centre and Drs there working with Drs at the Mayo.

We do have the National Health Service in the UK but we pay for our helth system through tax and national insurance, so it is set up completely diffrent here in the UK than USA.
Although your health system in many cases are much much better than here in the UK especially with NMO cases.


From next year the Igg test will be available in the UK.
So you never know we may get the test befor as you say Paddys day LOL

The worrying factor is that it is only 70% accurate and in some instances people are worried as their tests come back Negative. Also it has been positive for TM.

The Japanese NMO specialists have been working on the NMO I gg test and they now have a much beetter version which is coming back 84%positive and not Positive for TM but it is early days yet.
If you would like to read more on this please go to the news section of the Forums.

Do you yourself have Devic's?

I hope that you can tell us more on the USA as it is a great help to us
thankyou
Gayle
_________________
Hi Im Gayle I was DX with Devic's/N.M.O just over 2 and a half years and have been working with friends and the help of the Walton Centre to get this website up and running we all need a network of friends and correct information about our illness.

[MoonlightD]

I’m SO glad to hear that the test will be available in the UK as soon as next year. It’s just unfathomable to me that something that should be so easy has been so terribly hard for UK residents for so long.

Thank you for asking about me, Gayle. I’m in that “ever-widening spectrum” of NMO patients. My NMO-IgG antibody test came back negative. And the spinal cord lesion evident on my MRIs is too short to meet the long-segment requirement--actually, quite a good thing! (My episodes of transverse myelitis have been relatively mild. During my last episode, my inexperienced neurologist didn’t order a spinal MRI, and I was too new to the game to know to ask for one, so the status of my spinal cord at the time will remain unknown.) My diagnosis was based on my history of optic neuritis—between 40 and 50 episodes; I’ve lost count—and completely clean brain MRIs for 15 years, as well as a few other smaller signs and symptoms, like those nasty leg spasms. My tests for every other related condition were negative. Fortunately, I’m VERY responsive to IV steroids, so I’ve been able to maintain my mobility and good central vision, and remain a productive citizen.

And thank you for this website. Gayle’s Place has the deepest and broadest collection of information of any Devic’s/NMO website I’ve seen. (This is not meant in any way to take away from the excellent sites of the Transverse Myelitis Foundation, Mayo Clinic and Walton Centre—all very informative!) Keep up the good work!

[gayle]

Dear Moonlight I am so pleased that you are here to share your experiences with us all.
That is what the forums are all about!
We love to hear about all the great views and ideas of others and this website belongs to us all.
It is so very important to communicate the way that we are.
We do try to make the website a place for hope in a positive way and try to give all the latest news that there is to help us all become more aware that there is news of great things on the horizons for us all.
And we hopefully let people know that there is news from all over the globe.
I would not be able to do any of these great things that we do without the help of my husband Johnny, I call him my researcher extrodinaire LOL.
He gets so excited when he finds some great news and says Gayle come read this he makes me smile often.
But also most important I would not be able to do any of this without the support we get from all of our users. SO THANK YOU Moonlight we appreciate all your words of wisdom.
And thanks to all that write in the forums and write to us personally.
Have a wonderful Holiday and take care .
Hugs Gayle
_________________
Hi Im Gayle I was DX with Devic's/N.M.O just over 2 and a half years and have been working with friends and the help of the Walton Centre to get this website up and running we all need a network of friends and correct information about our illness.

[Linzy9]

Hi guys

I was dx at the begining of Dec 06 at the Walton Centre. I have been told that my bloods can be sent to Oxford for testing.

Positive thinking seems to be the answer

[gayle]

Hey Linzy and Welcome to the Devic's Support website/forums.
That is what I have also been told but when do they begin?
Please keep in touch and let us know.
Just wanted to welcome you and let you know that we are all here for you and if you need any advice or help ask away.
Also you may be interested in knowing that we have a live chatroom normally on thursdays the next will be held on the 4th of Jan at 9pm UK time and that is around 4pm USA eastern time.
Its great fun and we have a great group of people from all over the world that join in the chatroom has its own registration so if you wish to join please join before the night.

You are very lucky that you are with the Walton Centre as they are the Experts in the UK with the great Dr Boggild, he is amazing.
Hugs
Gayle
_________________
Hi Im Gayle I was DX with Devic's/N.M.O just over 2 and a half years and have been working with friends and the help of the Walton Centre to get this website up and running we all need a network of friends and correct information about our illness.

[Linzy9]

Hi Gayle

I have been seeing a neurologist in Edinburgh since April 06, he arranged an appoinment for me with Dr. Boggild whom I met at the begining of Dec 06 (and was dx). My referal letter asked Dr. Boggild if my bloods could be sent to Mayo clinic for testing and Dr. Boggild said they are now able to send bloods to Oxford. Sorry I dont know exactly when this will be done. I sometimes forget to ask questions as Im trying to take all the information in.
I have an appoinment at the end of Jan with my neurologist in Edinburgh so I will ask then and let you all know.

I also have some descisions to make about treatment. Has anyone been given Rituximab and azathioprine.

Im also looking for information on pregnancy from anyone who can help.

Thanks for making me feel welcome Gayle, and thank you for this website as it has helped to know that Im not the only one left in the dark searching for information.

[gayle]

Hi Linzy
Just wanted to lt you know about Azathioprine, there is a whole section on Rituximab, but at present there is a warning on the drus as 2 people with Lupus/SLE have died, its is a simalar illness to Devic's some people are being refused the next dose, so check out info in the news!
Use the search at the top of forums use one word and it will bring up all related stories about all you want to know.
Also in symtom management in the forums has lots of info on Azathioprine also called imuran, I have been taking this for 2 and a half years and many of us do , it has deffinately helped me personally and they monitor you carefully as they are checking for changes in the liver and kidney functions.
I have been keeping well on this drug and have got lots of lost sensations back, I still take it easy and I do get very tired especially when the weather gets hot.
I enjoy the winter a lot more than the summer.

Pregnancy and Devic's well I am a mother who got ill after both pregnancys, I have been told that now I take Azathioprine/Imuran that I should not try to fall pregnant on the drugs!!
But if you decide that you want children then you either try before you go on the drugs many mums that I know with Devic's have all stated to me that they stayed well during pregnancy but many relapsed like myself after the birth.
I have done lots of research on this and discussed this with Drs from the walton centre.
It seems that Devic's and pregnancy may be simalar to MS and pregnancy that we stay well and almost go into remission while pregnant but because the baby protects us while pregnant afterwards we choose to breastfeed and in MS they say that breastfeeding can cause a relapse, so are we the same possibly!
I breast fed both of my children and got ill a few weeks after exhausting myself from being the food for my babys.
They stay on the breast for long periods when they get bigger, I would say as you are in the area where MS is prevalent IE Scotland then speak with the Neuros and Ms nurses about breastfeeding, but it is still possible to have babies. But just take care of you you are NO1 and if you fall ill its very hard to care for your baby.
This did happen to me but had I have known I was ill before then I would have chosen BOTTLE feeding for sure.
I hope that this has helped and I hope that one day we meet as 2007 is going to be 4th Devic's conference and will probably be up north (Yorkshire area) and we are also holding a Devic's Garden Party in the summer down here in London.
Keep me posted on the Pregnancy part also.
One more thing is there is a lovely lady called Donna I have spoken with Donna and she had a baby early this year she is in Scotland and she is in the Penpals why not write to Donna she will deffinately tell you how she got on with the pregnancy.
Hugs and have a great Hogmany Sweety.
Gayle
_________________
Hi Im Gayle I was DX with Devic's/N.M.O just over 2 and a half years and have been working with friends and the help of the Walton Centre to get this website up and running we all need a network of friends and correct information about our illness.

[MND_Malvern]

Hi all,

I have scanned through the conversations here about testing and am a little confused. After many years of 'watch and wait' I finally got my MRI and from that two lesions - left horn of head and spine (T5 only) and an A-Typical diagnosis for Devic's. I am pushing for more tests and have been offered a lumbar and an Aquaporin antibody test. I am fine with the lumbar and that it will show or not show protein release but has anyone had experience with the Aquaporin test as it is supposedly only a 50% marker for Devic's.

Is there any further advance on the NMO IgG test in the UK that I can ask the neuro for? Or anything else for that matter.

BTW: I have never had medication for any of my attacks so I am envious that you guys have doctors who seem to know what to do. I suppose that my biggest fear is living in no man's land again but this time between Devic's or MS, after all I need something to write on a job application form!!!..
Martin.....x.
_________________
Have fun and enjoy life! Martin.x.
If you want to chat I hang around these messenger sites:-
SKYPE : vicars_tart
MSN Live Messenger : intrinsic_unity@hotmail.com

[gayle]

Hi martin sorry long time for reply, ok the NMO IGG is being done at Oxford now at the Radciffe as far as we know. Maybe your Specialist can find out for you.
Also just to let you know the tests work better when people are not on any meds, so that for you is a good thing also some drs are still sending off to Mayo from the UK also.
And it is very annoying that if your Dr is not giving you treatment if he feels that you need the nmo igg as me personally and some specialist that I know believe that it is not a good test.
It only seems to show on some people and some peoples test come back different each time they have the test.
for all info on NMO IGG type into search box at top of forums and it will show all info we have.
I agree that you should have a MRI/lumbar puncture to get the correct diagnosis.
keep pushing the doctor as some are good and some not so hot.
The other thing that you could do is once you have had all the tests ie MRI/Lumbar, contact the Walton Centre in liverpool and ask to see Dr Mike Boggild or Dr Anu Jacob for a second opinion they are the UK experts.
there is a link on links page for the Walton Centre.
Hope you are well and keep in touch]
Hugs
Gayle
xxx
_________________
Hi Im Gayle I was DX with Devic's/N.M.O just over 2 and a half years and have been working with friends and the help of the Walton Centre to get this website up and running we all need a network of friends and correct information about our illness.

[MND_Malvern]

Many thanks Gayle, Glad to see you back online and hopefully feeling well again.

I was just saying yesterday that I fancied a day trip to Oxford... My neuro is probably good but like many, one step ahead of the patient as I get the feeling I may be the first Devic's they have seen - but only guessing. I am the one asking for the NMO IgG as well as his Aquporin's test - so I stand corrected in miss understanding that this might have been a better test. I am fine with being a mystery - that's me all over really, just want to make sure that if and when I have an attack that I get the right potion! After this many years I might have gotten used to try it and see, but it doesn't stop us getting a bit fed up of that process does it?

If anything I am wary of the other pills and potions that I take for depression and BP skewing any results. Still await the lumbar - "Now, Mr Davies, you'll just feel a little prick!" - yes story of my life.... On a much brighter side it good to see that the BBC 'Ouch!' podcast has been givena reprieve and is running again - if you guys haven't heard it, go and give it a try - brilliant bitchy but sensitive humour, and yes I am going to shop at 'Cripp's causeway, Bristol'

Enjoy the rest of summer folks, hopefully it won't get too hot for each of us. Martin - off for breakfast at 13:05pm.
_________________
Have fun and enjoy life! Martin.x.
If you want to chat I hang around these messenger sites:-
SKYPE : vicars_tart
MSN Live Messenger : intrinsic_unity@hotmail.com

[Linzy9]

Hi guys
Is everyone in the UK now being offered NMO-IgG test?
Typing this blind so excuse any mistakes I might maker.
Linz

[MND_Malvern]

Hi Linzy,

That is hard one really, for starters we have only just got the NHS to publish an entry on the NHS Direct Database about NMO, and that took our of us battering the NHS and our MP's.

Are you in the limbo land of "MS or NMO - but we are not quite sure"?

The tests are available, but some data has to go away to specialist labs for analysis - mainly the bloods and spinal fluid samples, but it does not take long - about 6 weeks.

If you are sat there with no sight but cannot get an MRI / NMO test then play your face girl and be calm but bloody minded about what you want! '

I said to my doctor 'I am sick of us piddling around waiting for something to happen, I don't mind what the result is, I just want an answer so we can get on with the correct work and any preventative / curative care.'

If your not sure that the team you have caring for you know what they are doing then be honest and say I want a 2nd opinion. then ask for a referral to The Walton Centre, Liverpool. But as soon as you know who you are to see there write them a letter, introduce yourself and tell them exactly what you want, e.g. MRI / NMO's etc. Then when they have the data you can sensibly go down and get the results together with a physical examination. You should not need to travel for these tests, but you may need a consultant knowledgeable enough to read the signs and justify the cost of the tests.

If you wish to chat in private, drop me a line intrinsic_unityAThotmailDOT.com

martin....
_________________
Have fun and enjoy life! Martin.x.
If you want to chat I hang around these messenger sites:-
SKYPE : vicars_tart
MSN Live Messenger : intrinsic_unity@hotmail.com