Fibro blood test

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Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 9/11/2017 8:11 AM (GMT -7)   
Has anyone heard of this new blood test for fibro? don't believe insurance covers it. Also not sure of the cost. A gal on a facebook page posted about it. Her insurance would not cover it and she did not know the cost.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Hallahan
Regular Member


Date Joined Feb 2014
Total Posts : 217
   Posted 9/11/2017 8:58 AM (GMT -7)   
Even if there's a test for it that's not going to make us feel better. Just good for insurance cases.

Barb

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 9/11/2017 9:38 AM (GMT -7)   
True. My thoughts were it could help if there is something going on the doctors can't find it so they say fibro instead of searching deeper.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

ReeMe
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/25/2017 11:31 AM (GMT -7)   
I'm brand new on the forum, and I'm wondering why this blood test isn't more widely known and discussed. I was given a kind of half-hearted fibromyalgia diagnosis by my former family medicine doctor in about 2006, but I just managed the condition on my own before and since. By managed, I mean that I try to get the rest I need, try not to overtax myself, and just live with the symptoms. Painkillers don't do anything, so I don't take them. And doctors, I find, are worse than useless with conditions like this.

But recently, due to misplanning, I recently found myself with flexible spending money that I needed to use or lose, so I looked online to see what's available for testing for fibromyalgia and learned all about the fm/a blood test. I'm aware that it's controversial, but it sounded reasonable to me as I read about it, so I decided it was worth it to go ahead and get it. The fact that many insurance companies cover it, including medi-cal, gave it some more legitimacy in my eyes. So I went to an alternative MD that I had seen in the past for my thyroid, and asked him if he could order it for me. I got it and the results were a very strong positive. A score of 50 to 100 is considered positive, and my score was 94. For a few reasons, I was glad to at least get a confirmed diagnosis. It's also helpful to know that there seems to be a genetic basis for the disease and that, if needed, my kids can be tested for the gene pattern sometime in the future.

Before I did the test, though, I searched online forums like this one, expecting there to be lots of discussions about the test and lots of people who had it done, and I was so surprised that the discussions were few and almost no one has had the test done--even since insurance companies started covering it. And I wonder why that is. If nothing else, aren't people curious?

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17528
   Posted 9/25/2017 7:02 PM (GMT -7)   
Most of us have had a lot of testing to rule out other illnesses that share many of the same symptoms as fibro before we received our diagnosis. So there isn't any point in going through another test. I was finally diagnosed with fibro 30 years ago. I know I have it and I know I don't have lupus, Lyme disease and other illnesses that are similar to fibro because I have had these ruled out. To me, that's the best way to go.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

ReeMe
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/25/2017 9:16 PM (GMT -7)   
Well I guess that makes sense if you're already quite sure that fibromyalgia is what you have. But for those who are still speculating, like I was, it made more sense to have a test to confirm the diagnosis rather than a bunch of tests to rule out other diagnoses. Now that it's covered by insurance, that is.

I actually decided to go ahead and participate in the genome study they're conducting. I don't really have any expectations that it will necessarily yield any results that will directly benefit me, but who knows, maybe it will eventually be of some benefit to someone.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17528
   Posted 9/26/2017 6:17 AM (GMT -7)   
BUT, you can have fibro and also one off these other illnesses! We have members with fibro and lupus and also fibro and Lyme disease! This is why I think it's best to rule out the other illnesses. Then you truly know what you are dealing with and can get the correct help you need.

My pain was getting worse and worse and fibro isn't considered a progressive illness so I headed to my board certified rheumatologist. After many tests and x-rays, I was diagnosed with ankylosing spondylitis...an extremely painful back problem...and also sacroiliitis and was put on things that have helped me immensely. I was blaming all my back, shoulder, hip, leg, and neck pain on fibro.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

ReeMe
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/26/2017 3:47 PM (GMT -7)   
Okay, I see your point there. You want to make sure to diagnose the progressive and treatable illnesses before settling on the fibromyalgia explanation as the only one, since those could cause more problems if they're not treated. Makes sense.

I initially went to a DO who really wanted to do some Lyme testing because of one particular high inflammatory marker I had, but the tests, as I understood them, weren't reliable enough to give me confidence and, anyway, I considered Lyme highly unlikely. I later, for other reasons, self-diagnosed as probable LADA, and then confirmed it with the endocrinologist, but no one would have tested me for that if I hadn't asked for it. And especially not my Family Medicine doctor! The same thing with my hypothyroid. I had raging symptoms, but the labs weren't convincing enough to my doctor, regardless of the symptoms. That's why I first started going to an alternative DO, and later her partner, an MD. I never did find out what caused some of the abnormal test markers that were originally found by the DO who thought I had lyme, but I retested for those recently and they were normal, so I'm not worried about them.

There's just so much that isn't known, and so much that supposedly is "known" but will eventually be overturned. Frustrating, but when I or my family members aren't well, I tend to go into sleuth mode and it sometimes proves valuable.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17528
   Posted 9/26/2017 5:24 PM (GMT -7)   
I just make sure I have the best doctors out there. Two of my doctors are affiliated with a medical school here in Florida. All of my doctors are board certified and nearly all are diplomates. Diplomates are tested every couple of years on the new things in medicine according to my Internist I had up north. I personally would never go to a family doctor. They don't have as much education as an internist.

I always tell members that 50% of the doctors graduated in the lower half of their class and yours could be one of them. If you aren't getting the help you know you should get, look for another doctor. This is very important with these illnesses.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
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