Would you pay?

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Would you pay?

Postby whoami » Mon Dec 30, 2013 11:14 pm

Now then,

if the blood test that detects fibromyalgia was offered to you, would you pay the approximately a thousand dollars (US) to have your diagnosis confirmed?

The blood test being 99% accurate, would you question the diagnosis you already have?
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Re: Would you pay?

Postby TATT » Mon Dec 30, 2013 11:36 pm

Hello Whoami,

Hope you had a great Xmas, in answer to your question.

I am lying in bed with my spine aching and throbbing for the last five hours on a rate of zero being no pain and ten agony and this is defineately between 7-8. So I could not give a grass monkeys about proving what I have got because I know I have it. So no I would not spend to confirm to others what I know I have because I live it. I hate it and it cripples me. I am so in pain today.

No I would not :cry:

Tatt x
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Re: Would you pay?

Postby *Lisa* » Mon Dec 30, 2013 11:47 pm

What i dont understand is if this is true then why isnt it global and given as routine? Ok maybe because of the expense but why then make a test thats too expensive for anyone to use? :crazy:

In my early days ... yes i would have paid for the test as my mind was flowing with anxiety and my head was spinning not knowing what was happening etc...

As it stands today... No as being a suffer for 15years i most certainly know now thats its defo fibro :shock:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Would you pay?

Postby whoami » Tue Dec 31, 2013 12:01 am

I am so sorry you are suffering right now. I am betting you overdid things for Christmas.

Get yourself rested up. The New Year is going to bring you better things ;-)

I am with you. Even though it was such a wonderful relief when I got a diagnosis, a name to this thing that is tormenting my life. It was a sign of validation, someone believed me, they knew what was causing my pain.

Would I pay for the blood test...no. Would I have it done if it was covered by health care...no

The best thing that has come out of this new blood test is not that we patients can have it done to tell us that what we are experiencing is real....We knew that already......The best thing is that others, people without fibro, even doubting Dr's have proof now, scientific proof that fibromyalgia does exist.
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Re: Would you pay?

Postby whoami » Tue Dec 31, 2013 12:14 am

Lisa....The blood test was determined as proof in California sometime last spring. I don't think it has likely been approved in various countries. It does cost around a thousand US. Most people would not be able to afford the test and insurances are not covering it yet. ,You can likely google fibromyalgia test and find some info.

I know it takes years for these things to be approved and the first few years are expensive. In order for me to have a test done for my cancer I have to have 2 needles costing sixteen hundred dollars each. They are not the actual test but they can't do the test without this medication first ????? Not covered by any insurance. It is always the way with new things
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Re: Would you pay?

Postby *Lisa* » Tue Dec 31, 2013 2:07 am

Some info i found if anyone wants to read on the blood test for fibro

http://www.webmd.com/fibromyalgia/news/ ... bromyalgia

With being a patient under the UK NHS i am very oblivious to the costs of such proceedures and even tho the NHS can faulter we are very lucky to have it.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Would you pay?

Postby zappa20 » Tue Dec 31, 2013 3:06 am

Interesting but still very early days. Was a fairly small study and according to article results are classed as preliminary . If this develops , would be interesting to see if a company invests in devising a method to increase the 'lack of whatever protein' they've identified. As the article says there are 6 million with fibro in the US then it would be well worth the investment, if it produced results. Think people would be much more likely to pay for a proven treatment than a diagnosis confirmation.

Could be years in the UK before our NHS would invest in this test or treatment. They have a limited pot of funds , and the board will balance the effectiveness of any test or treatment against the cost.
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Re: Would you pay?

Postby millymoodoo » Tue Dec 31, 2013 10:59 am

Hi all

If it is anything like the infliximab I was given 13 years ago the 1st treatment was costing £15,000 and then £7,000 for extra treatments. It still was going through trials and still wasn't licesced to use it willy nilly. I remember I had to have 2 dr's sat with me the whole 4 hours until the infusion ended, the resuscitation trolley was brought into the side room with me and I had to sign a consent that I understood it was still in trial. Now they use it all the time but I was desperate with the crohn's disease but as it turned out this drug didn't help as much as expected and I am still on high dose steroids!!!!

Milly
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Re: Would you pay?

Postby whoami » Tue Dec 31, 2013 2:25 pm

Milly....I. Am sorry to hear you also suffer from Crohns. I know how debilitating it can be. I hope yours is under control at the moment. Xx

My close friend has it. She has had her lge intestine totally removed, her rectom, and her anus completely removed and closed. She has one lge scar from her ribs down that has been opened over 27 times and no longer has a belly button. A lot of people do not understand the seriousness of Chrons. My friend has such a great attitude and she says one of the benefits is that she can wear thong underwear now that there is no butt to irritate while wearing one, LOL
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Re: Would you pay?

Postby painprincess1 » Tue Dec 31, 2013 9:31 pm

Like most I bet if I had a lot of money to throw about then yes I would, but I don't so no,do I need it to prove I have it no I believe my dr 100present .
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