Food for thought...

Discussion in 'Fibromyalgia Main Forum' started by Shananegans, Nov 12, 2005.

  1. Shananegans

    Shananegans New Member

    How many of you have been through countless tests to find out that "there is nothing wrong with you?" Every blood test, MRI, CAT scan, and other tests always come back clean. I don't understand how I can suffer so much but technically not have anything wrong with me.

    How many on this board have the same results? Technically, according to tests, you should be perfectly healthy... but you are not? What does that mean? How can they ever find a cure if there isn't a reason? It's so frustrating!

    At this point I honestly would love to hear that I have a tumor or something... Atleast then all of this would make sense. Any comments and thoughts are appreciated.

  2. abbylee

    abbylee New Member

    My sleep study showed severe alpha intrusion for which I was given Xyrem. As for the other problems, all we can do is treat the symptoms.

  3. dononagin

    dononagin New Member

    I know.. for 10 years I've gone through repeated testing.. they tested me for lupus like at least 5 times.. I almost wish it would have come back positive at least then I would feel justified for feeling so crummy. I was diagnosed with CFS 10 years ago after a bout with Mono..but had other symptoms that didn't relate to CFS.. Finally I was referred to a great rhumie who says this is not all in your head... fibro is very real..and I have it.. I had 18 of the 18 tenderpoints it turned out + some extras! According to the tests you should be healthy.. but you and I know that doesn't mean that we are. I really wish the public was given more education on Fibro/CFS.. it's like most people and even most doctors don't believe us and it's so frustrating! I mean we even second guess it ourselves!
    The doctor that sent me to this rhumie sent me there because he didn't believe my diagnosis of CFS! He said it's not a diagnosis but something doctors label you with when they give up! The rhumie promised me he would send his some information on fibro and cfs..
    Ok... gotta go.. got a customer!!
    I have little anomalies with my tests.. my ra is usually slightly high.. I've had trace blood in my urine the last few tests.. my esr has come back slightly high a few times.. but all of them are just barely above range..
  4. Bambi

    Bambi New Member

    things too, not things like Mycoplasms and all the other viruses etc.. And even when we do get those tests and get positive results it doesn't even mean getting rid of THOSE will cure us. So they just plain haven't found out for sure what does it.
  5. hcarriero

    hcarriero New Member

    I understand so well. I have been through so many tests. I am new to the site. I am going anywhere for support. I cant remeber the last time I felt good. I work and sleep. I am tried of telling my family I dont feel well or I am too tired.
    One day that I dont ache..i dont feel too tired to move i dont have a head ache,,

    And we keep on testing, I guess we are fortunate that it isnt progressive...

    Chin up!!

  6. elsa

    elsa New Member

    Tests are out there that do show things medically wrong with us. Unfortunately, they are detailed, intricate and expensive to run.

    Any physician that has signed a contract with an HMO has guidelines he/she must follow. Remember, the HMO's came into being as a response to the escalating cost of fee for service healthcare during the 80's.

    The theory was that MD's were ordering unnecessary tests and performing unnecessary invasive surgical proceedures at a heafty price .... for a nice profit.

    The HMO's were supposed to encourage alittle self restraint in diagnostic testing, medications, surgeries, CT Scans, etc. They offered the doctor xyz amount of money, negotiated with labs, surgical units and pharmacies for a discounted rate for their members and life was supposed to be good.

    Well, no go ... Instead of the doctor being the one with their hand too far out ... now it is the HMO's. The PCP's got hit hard with some things and so did we patients.

    For example ... To test for hypothyroid most of us now know we need more intricate and technology-costly testing to show hypothyroid in CFS/FM patients.

    The HMO who holds your doctor's contract and pays his salery has negotiated with the lab for TSH, T3 and T4 as necessary and routine testing for hypothyroidism. They do not authorize or turn a blind eye to the more expensive Free T3 , Free T4 and rT3 testing we need to show hypothyroidism.

    The doctor will get "punished" for ordering too many of these costly tests. It is not written blatently in the contract that "A" will happen if you order xyz test too many times ... they get them in other ways. Doctors who follow the "keep those costs down no matter what" get rewarded with "bonuses" at the end of the year. The reverse happens and ends up causing docs money if they don't.

    If your doctor didn't follow the "guidelines" ... then no money. Also, your doctor cannot discuss what those "guidelines" and "best practices" are in public. All but three states will allow an HMO to fire any doctor who does just that.

    As an added side note ... patients cannot sue their HMO's if the common practice ends up hurting them ...

    So, after all that ... to answer your food for thought ... We do have testable abnormalities ... hormonal, viral, bacterial, mycoplasms, sleep disorders, hypercoalgulation, faulty wiring in the pain perception department making it neurological as well.

    To uncover these abnormalities, it takes expensive and detailed testing. Our illnesses haven't reached a status yet were managed care thinks of these tests as routine in diagnosising/treating CFS/FM.

    I have thought long and hard about the many specialty healthcare businesses popping up and that don't file the patient's insurance directly. It isn't for the "love of money" nor greed ...

    They are going back to a fee for service type set up. They don't have to follow the managed care's diagnostic/treatment guidelines .... they do the doctoring themselves .... make the judgement calls and decisions based on medicine as they know it ... not on a negotiated, "what's reasonable for this illness" treatment pulled together buy business majors and insurance execs.

    To further this thought ... those who have posted on the FFC test results have given the rest of us a chance to see this plan in practice. With no one telling the docs "no ... you can't order that" intricate, expensive and technology based testing, all kinds of abnormalities are showing up in CFS/FM patients. These are not trumped up abnormalities ... but problems that were proven to exist in CFS/FM during research studies before the FFC's openned their first door.

    Quest Labs is the largest diagnostic labratory in the United States. They of course do all kinds of business with managed care organizations ... but they also do business with these independent healthcare businesses.

    And, wonder upon wonders ... for those who object to Quest Lab's testing costs for CFS/FM, Quest is one of three largest labs who allow patients to walk in off the street and have any test run on them that they want. Things can be set up via their website ... have blood drawn and sent to Quest and they will fax, email, whatever the results directly to you ... no doctor needed. And ... the doctor's don't mind! It takes a big burden off their shoulders.

    These labs generally charge the patient about 50% less this way vs having tests ordered through doctor's office. Insurance companies cover Quest ... they can't afford not to ... It's when the tests revolve around a managed care contract that the insurance companies carry the clout.

    Very long post ... but a very good thread topic. I have learned in my treatment journey that we do indeed have many markable and detectable abnormal system dysfunctions. We are not so crazy after all. We just cost too much to the managed care plan.

    It's much less expensive to send us to a psych for treatment and to tell us to get more exercise for improvement then it is to order all the correct, but expensive tests that show how sick we are.

    Tansy has shared with us UK's dream treatment program for people with these illnesses. It has a similar ring to it, but much more frightening. If a very powerful phychiatry group gets their way all CFS/FM patients will be sent through forced, graded exercise and cognitive behavioral therapy ONLY ... nothing else.

    This saves the government a hugh amount of money. These patients will not get a vote .. no choice. This will be the free healthcare's only approved treatment for CFS/FM/ME.

    No intricate blood testing or treatments or sleep studies.

    Far removed from the managed care dilemma we face ... but not too far. The objective is the same ... bottom line, keeping costs down.

    Before everyone launches through their computer at me ... please remember that I am not an FFC patient (they were just excellent examples), I am a licensed health and life agent and my husband is in healthcare admin/management/with detailed insurance,managed care understanding.

    I think the goal of the managed care organizations was a worthy one, it just has fallen short of the mark.

    A woman went to her PCP complaining of abdominal pain. He ordered a CT Scan for seven days in the future. Her abdominal pain refused to wait ... her appendix ruptured before the "seven days ahead" arrived.

    It was discovered that it was her managed care organization's standard guideline/best practice to have the physician wait seven days ... hoping the pain would go away or resolve itself without having to spend the $$ for a possible unnecessary CT Scan.

    This is not antedotal ... The facts of the case are easily researched as the case went before the Supreme Court. The lady lived, but as you can imagine, she had quite a bit of long and painful health issues to deal with as a result of the rupture.

    She sued her managed care organization for risking her life, jeapordizing her health and causing completely unnecessary pain and suffering. The Supreme Court ruled against her ... what came out of it is that patients cannot sue their managed care organizations ... Wow!

    What's the answer? Haven't gotten that far yet. If you can (and anyone else reading this diatribe), get to an independent healthcare business, or go on-line and order tests from Quest yourself. Find out what's wrong ... It's findable, detectable, treatable and remission is possible.

    Thanks for indulging me here ... I may have used up my weekly posting priviledges all on one thread ...

    Take care,


    PS ... Interestingly, Anti-aging medicine and preventative medicine also are going back to fee for service set-ups. This isn't too much of a threat currently, but be keeping your eye on the ever influencial and aging babyboomers. Their numbers are hugh ... managed care will be paying attention then.

    Along those lines ... Think how many CFS/FM/Lyme/ME patients there are ... whew, that's going to cost them business too.

    Just a thought ... no one shoot the tall, skin, chick with brown hair over this O.K.?!?

    [This Message was Edited on 11/12/2005]
    [This Message was Edited on 11/12/2005]
    [This Message was Edited on 11/12/2005]
  7. elsa

    elsa New Member

    Who says it'll cure us ... I do not get it. I haven't seen anyone make that claim.

    It will help put us in remission .. (along with other treatments) .. remission of a chronic, incurable illness. Please tell me who says they have a cure or that treating virals/mycoplasms/lymes will cure us ... I always want to learn everything I can.

  8. dononagin

    dononagin New Member

    just wanted to say.. you have some great insight on this.. thank you for taking the time to share this with us.
  9. Shananegans

    Shananegans New Member

    Thank you so much for your post. You gave me and anyone else who made read this some great insight. Long post or not... It's some great information! It's always good to have someone on the "inside" tell everyone else what's going on. Again, thank you!