Status
Not open for further replies.

TrishM

New member
Joined
Feb 16, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
10/1989
Country
US
State
FL
Hi Fibrofolk. I have had Fibromyalgia and Chronic Fatigue for a very long time. Thankfully, I am doing much better right now. I read once that Fibro is kinder to older folks. I hope that's true. I don't want to go back to where I've been. I have a few questions, though. I wonder if anyone has invested the money to have the new FM test. I'd like to know if it really works.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
TrishM,
Welcome to the forum. Hope the weather is nice in Florida this time of year. I lived in LaBelle, Fl, a few years ago and always enjoyed the time of year when the bugs and humidity were gone for a bit. Glad you found us.

What is the new fibro test called? I was unaware of any testing other than being poked in many areas for pain response. Now you say there is something new out there please tell us about it. :)
 

TrishM

New member
Joined
Feb 16, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
10/1989
Country
US
State
FL
Web MD has an article about it. It was introduced last October by EpicGenetics. The good news is that it is a simple blood test with quick results. The bad news is that it costs $744. It is supposed to be very accurate. I haven't read enough of the information to know how it works, but I thought that to be considered a disease, a condition had to have a blood test to determine if you have it or not. I think this could be a step in the right direction if it proves to be as accurate as the company claims.

I am embarrassed to admit that we have a week of sunshine and mid-80s.
 
Last edited:

MEgersheim

Active member
Joined
Jan 18, 2014
Messages
53
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
Massachusetts
Hi Trish,

I have had FB pains for as long as I can remember, but was only diagnosed last month by a Physiatrist or Rehabilitation Therapist. Since then, my PCP and the Rheumatologist he referred me to have both kind of brushed it (the diagnosis) off but ordered blood tests to eliminate any other diagnosis. Instead of going through endless MRIs, CAT scans, blood tests and almost a spinal tap for twenty years, wouldn't it be nice for us to be able to just take ONE blood test and get a diagnosis?

However, I personally would not pay that much money for a test that is in its preliminary phase. So far, the people at EpicGenetics, who have a sound Advisory Board, have only done one 18-month study with 200 people. Although is was very promising, and by FDA standards, waiting until more studies were done would be the best decision. Who is to say that our doctors would accept the results? However, the results are based on the fact that FM patients have lower levels of cytokines than the general public. If you look up "cytokines" you will see that there are some research studies linking it to neuropathic pain even though it is part of the immune system.

If this becomes an accepted blood test for FM it could mean a step in the right direction for all of us and it would show that FM is actually an Immune-deficiency disease after all.
 

MEgersheim

Active member
Joined
Jan 18, 2014
Messages
53
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
Massachusetts
However, if you can afford it, I would say to go for it. After reading the FAQ, I think I would if I had the money.
EpicGenetics is not only testing blood for a certain immune deficiency, but also keeping samples on file to better understand the disease. This is just one step in a big plan that the company has to understand, research, treat and cure FM.
Everyone should check out the website.
 

TrishM

New member
Joined
Feb 16, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
10/1989
Country
US
State
FL
I think I am too old to spend that much money on a test unless it would help a newer generation. I am interested in this test, though. When I was diagnosed, it was a trash can diagnosis. Now only the uninformed believe that it doesn't exist. We've come a long way, but a test would make all the difference.
 

LivetoErr

Distinguished member
Joined
Jan 15, 2014
Messages
137
Reason
DX FIBRO
Diagnosis
06/2012
Country
CA
State
AB
I'd wait until it was better studied, however, what's $744 compared to all the money spent on other tests? Wouldn't insurance companies rather pay $700 for a blood test than $1000 for an MRI, etc?

There has to be more physical evidence of Fibro than sore spots. It does so many random things to you that, your body has to be registering it somewhere. If they tested for each little issue and put all the results together, it would be more than $744.

Man, wouldn't clinical evidence be nice. It would certainly help us sufferers be better understood.
 
Status
Not open for further replies.
Top