What TESTS should I demand in the "ruling out" process??.........

Discussion in 'Fibromyalgia Main Forum' started by bemmett, Feb 21, 2006.

  1. bemmett

    bemmett New Member

    Hi everyone,

    As I begin this process of ruling out other diseases, what tests should I be asking for from my Dr.?

    I've read so many things and can't keep them all straight - <brain fog> - :)

    Has anyone compiled a list of necessary tests?

    Thanks so much,

  2. smiffy79

    smiffy79 New Member

    hi bret
    well first i wouldnt demand anything. what has your dr said to you so far?
    make sure you tell him everything, all your symptoms. you could even tell him what your thinking it is, but in my experience drs dont like that too much.

    your dr will order tests in line with what you tell him, i have been x-rayed loads of times because as a child i didnt have the vocablary to explain whati felt.
    ive had blood tests a plenty even checking for bone marrow cancer and most recently an mri to rule out ms.
  3. EllenComstock

    EllenComstock New Member

    Thyroid testing - (some of the symptoms like pain and fatigue are the result of low thyroid. Of course many of us, like me, have both low thyroid and FMS)

    Testing for arthritis

    That's all I can think of for now. Stormyskye listed most of the ones I had.

  4. Hope4Sofia

    Hope4Sofia New Member

    This is all usefull info for me too as I am in this process as well.

    I have had many tests done over the years but not the right ones I guess. MRI's, CT scans, EEG, X-rays. Now that I have a better idea of what we are looking for the tests are in totally different areas. In fact no one in 15 years has run a single blood test (outside of the traditional ones run during pregnancy). And the scans/MRI's were all done of my sinus/head - turns out this problem isn't one thing in one spot. I can't totally blame the DRs as I just had no clue what to tell them and just went to inidvidual doc for each symptom.

    Now, my approach is to see what these 7 viles of blood that my doc just took tell us. After that I'll start going down the list of symptoms which I seem to share with many on this board and rule each issue out one at a time. Honestly, it feels like I'm at the bottom of a huge mountain but there's no way to get over it but to climbe (or TNT, hee,he.)

    Good luck, you're not alone in this,

  5. bemmett

    bemmett New Member

    Thanks for the quick response and the great information.

    But, I don't understand. What insurance company wouldn't want to cover thousands of dollars worth of testing at once. (tongue resting firmly in cheek)

  6. bemmett

    bemmett New Member

    Glad to know you.

    My experience with MOST doctors is this:

    If you tell them what your symptoms are, they will reach for their pad and right you a prescription.

    If you tell them what you would like to be tested for, they will reach for the blood work sheet and start checking boxes.

    Most do not want to take the time to deduce what is wrong. If it can be taken care of with a prescription - great.

    My, I do sound cynical.

    Good luck with your testing.


  7. bemmett

    bemmett New Member

    My father has CFS/FMS and my mother has RA.

    Both are on thyroid meds. I guess that one will be pretty important to check.

    Best to you.

  8. SherylD

    SherylD Guest

    I am sooo glad that you posted this question..I was just going to ask the same thing!

    I will be taken it all in too..

    Thanks to all..

  9. spiritsky

    spiritsky Member

    Don't forget getting checked for Candida...And get all your hormone levels checked - DHEA, Pregnenealone, Estradiol, Progesterone, Testosterone, IGF-1 and of course Thyroid.

    I've also found Live and Dry blood analysis very effective if you can afford it and find someone to do it for you.

    And get a hair mineral analysis done to check for mineral deficiencies and sometimes mineral toxicity. I see a lot of poeple taking lots of Calcium which can suppress your Thyroid and give you kidney stones if you take too much. My wife was doing that at one time and was getting very very tired. Looking at her hair analysis made it obvious what the problem was.
  10. EgyptStarr

    EgyptStarr New Member

    Wait....... do you mean to tell me that if I go to someone who SPECIALIZES in these illnesses, they will automatically test for EVERYTHING that could be the real culprit???

    That makes perfect sense..... wish I would have realized that. My PCP has only done blood tests and a sleep study. I have several prescriptions I take, and I don't like that. Those get WAY too expensive!!!

    Now, once I get my insurance back...... I will talk to my PCP about a referral to a specialist and PRAY. The doctor has to REFER me for my insurance to cover it.

    Are all rheumatologists considered experts in CFS/FM? I've read alot on here about rheumys; that's why I'm asking.

    Bret.... thank you so much for thinking to ask such a great question! I've never thought to ask, though it seems so obvious! And I've never known anyone else to ask either!

    Anyway..... xchocoholic, PLEASE reply! Thanks!

  11. bemmett

    bemmett New Member

    Best wishes on those seven viles of blood.

    If you find any of that TNT in those viles to knock down our mountain let me know.

  12. spiritsky

    spiritsky Member

    if you go to an FCC clinic, and if you can afford going, they will do everything, test for everything and get you on the right road to recovery. After trying just about everything else, I've been going to the one in Torrence, CA for several months now with great success.
  13. bemmett

    bemmett New Member

    Off to take a long winters nap.

  14. EgyptStarr

    EgyptStarr New Member

    I can't afford and don't live anywhere near an FCC clinic. Are they the only ones who will do all of that?

  15. SherylD

    SherylD Guest

    I am no where near one either..Are there other specialist that would do all of this testing..Or should we just ask our PCP??

    I wish I lived near a FFC..I think it would be worth the money just to get everything ruled out..Peace of mind..
  16. spiritsky

    spiritsky Member

    but I don't know of any. But my FFC clinic isn't near me either. But they have an outpatient program which works like this:

    1) The first visit is in clinic. So you'll have to fly down, but the clinics are all near the airports so it's easy to get to them.

    2) First day the doctor will see you in person and they will run lots of blood tests. I think my first visit was about 20 different tests.

    3) After that you fly home and the next visits are done all over the phone. Prescriptions will be mailed directly to your house - no need to go to a pharmacy to get them filled.

    4) Take meds and start feeling better.

    It is pricey though. I paid $385 for the first two visits then $285 thereafter but if you have PPO insurance I think you get most of it back (I don't have PPO) and lab tests are I think covered (my doctor at Kaiser runs mine for free). Also I think prescriptions are mostly covered but except HGH injections (if you need them).

    Not sure if all clinics charge the same.
    [This Message was Edited on 02/21/2006]
  17. xchocoholic

    xchocoholic New Member

    I'm not medically inclined, so forgive me for not knowing the test names, but....

    Back in 1992, I brought 2 years of medical records to the CFIDS / FM specialist. He looked them over and then proceeded to order his own. I have no idea what lab work he ordered. I just know that by that time I had been tested for everything anyone could thing of. Including a protoscope courtesy of the Mayo clinic.

    At that visit I had nueorpsychological testing done by a psychiatrist who worked with my specialist. Which I failed miserably, by the way. I had a brain scan. And then there was some sort of breathing test that I did while riding a bicycle. That one still sounds weird, but it was cutting edge at the time.

    What is a FCC ? My doctor is 8 hours from my house, but well worth the drive. He understands this illness better than anyone I've ever met.

    Good luck ... Marcia
  18. bemmett

    bemmett New Member

    for the great information.

    I had heard of the Fibro and Fatigue Clinic, but the nearest one to me is Las Vegas.

    I didn't realize that after the initial visits the rest are done at home.

    That is SWEET.

    Looks like I'll be heading to Vegas soon. 777

  19. bemmett

    bemmett New Member

    I cut and pasted all the tests that everyone has mentioned so far.
    Please continue to mention other tests not on the list.

    This will help those who cannot make it to a Fibro and Fatigue clinic or who don't have an FMS/CFS specialist nearby.

    Mycoplasmas - there are 5 I think that can cause health issues and some of them are related to Gulf War Illness.

    Lyme and Lyme co-infections

    Vitamin deficiencies

    Liver, kidney, gallbladder function

    Adrenal fatigue

    Testing for arthritis

    For the thyroid testing, most docs will check T3, T4, and TSH. Ask for reverse T3 and T4 testing as well.

    Viruses - EBV, Parvovirus (there is a human form), HHV-6, CMV (cytomegalovirus).

    Chlamydia pneumonia and mycoplasma pneumonia are two other "biggies" a lot of us seem to be positive for.

    Be sure to ask your doc to test for iGg, iGa, and iGm on these. I get the letters mixed up, but one indicates chronic past exposure/infection (so you have antibodies for it, that's how it's supposed to work anyway), one indicates recent past infection, and one indicates current infection.


    And get all your hormone levels checked - DHEA, Pregnenealone, Estradiol, Progesterone, Testosterone, IGF-1

    Live and Dry blood analysis

    Hair mineral analysis done to check for mineral deficiencies and sometimes mineral toxicity.
  20. Fixedin06

    Fixedin06 New Member

    Without reading all of the responses, I can tell you I have probably had every test known to doctors run on me, several more than once. The main problem with most of these tests is that they can fluctuate, big frustration, but aside from ANA, Rheum Factor, sed rate, and thyroid (including the thyroid peroxidase test), para thyroid (many docs just run the TSH thyroid test and write you off if it comes back in the "normal" range, which many docs can't even decide on that either) so make sure they really check the thyroid. It can also show positive lupus anticoagulant which is another indicator. They can run the genetic tests for different diseases that they may already suspect, there are so many, you kind of want the beginner ones run first. Then they can narrow down the genetic marker tests instead of running the gammit. My main advice is do your homework, understand what these tests mean, and keep in mind that they do fluctuate, very very frustrating. I can test positive for ANA one week and negative the next. The other thing is that different labs use different ranges for what they call "normal". So an ANA of 1:80 is positive in one lab and borderline in another and downright negative in a third, so that's when your homework comes in handy. When you see a 1:80 along with several other borderline positive resutls, sometimes things can be put together that way. Most importantly too is to keep track of your problems, I guarantee when you get to the doc you will forget about your swollen ankles that you had for a solid week but it was 2 months ago. So write down what happens to your body. Finally, if your doc says really ridiculous things, or just does not believe you a lot, probably time to move on. I have had docs that were not receptive to helping me, ones that are not proactive, just reactive after horrible things had already happened, make sure you are happy w/doc and be your own best advocate. That's about the best advice I can give after dealing with docs for the past 10 years, in three states and one foreign country (love that Military Pilot husband!!) Good luck to you, and get copies of all your records as you go, always have copies of everything they do to you and for you... Good health, Lori

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