Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Blood Work is Normal???

Discussion in 'General ME/CFS Discussion' started by lgibson2017, Feb 6, 2017.

  1. lgibson2017

    lgibson2017

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    Hey, guys! So I was diagnosed with CFS about 4 months ago after 2 years of having just about every symptom...ME is a perfect match for everything that's going on, with one problem....all of my bloodwork just came back normal!! Wtf? I'm so confused and afraid I'm going to lose my credibility with my doctor because I keep telling him about these symptoms and when we test my blood everything looks fine. Last time my sed rate was elevated, at least, and this time it's completely within range, if not a little low! But I'm still in pain!!! What the hell is going on?

    Does ME just not show up on a blood test? God I'm so scared that I'm just crazy. After 2 years I thought i was over the "I'm just insane" phase but apparently not.

    Any ideas?

    Thanks,

    - Lauren
     
  2. erin

    erin Senior Member

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    Hi Lauren ME does not show in blood tests. There is no specific ME marker. Sorry about your symptoms, I hope you can rest as much as you can.
     
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  3. Jessie 107

    Jessie 107

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    Hello Lauren,
    Yes, all my blood work came back normal too, me/cfs doesn't show up on blood tests.
    I have been feeling ill for nearly two years and two months ago my doctor told me that he thinks I have me/cfs.
    I have been reading lots about it and the only thing that seems to help manage symptoms is resting and not doing too much! Very boring and extremely frustrating, I absolutely hate not doing anything all day and I am struggling with it to be honest I'm so fed up with waking up feeling ill every day. I was so active before I got this horrible illness, I would easily walk 10,000 to 12,000 steps every day, now I can bearly walk for half an hour, or it brings on my symptoms.
    My doctor has reserved me to a rumatologist, not sure what he can do but I will see.
    My symptoms are feeling like I have the flu, sore throat and swollen lymph node, brain fog, muscle pain and no energy to do anything.
    Im just hoping to manage it but struggle trying to get my pacing right at the moment.
    I really hope that you recover.
    Jessie
     
    erin likes this.
  4. lgibson2017

    lgibson2017

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    @Jessie 107 S A M E. I know EXACTLY how you feel, as that's how it is with me! Only I'm so damn tired it feels good to rest, which is good for me that I don't hate resting.

    I'll be seeing a PM&R (Physical medicine and rehabilitation) specialist soon as well as a Rheumatologist, and right now my biggest ally is my Infectious Disease specialist.

    Good luck to you!
     
  5. Cheesus

    Cheesus Senior Member

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    I had abnormal liver scores, but no one knows why and it isn't a typical symptom of ME. Apart from that, all my values are normal. I am very severely sick.

    Don't fret about your blood tests. It doesn't mean you are not sick or that you are any different to the rest of us.
     
    Jenny TipsforME likes this.
  6. Mohawk1995

    Mohawk1995 Senior Member

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    As others have said, bloodwork being normal is the norm for CFS/ME. In fact, all basic radiologic tests and lab tests will often be negative. Even some tests like viral antibodies can be confusing because a "normal" (no such thing as normal is averages of averages) person can also test positive to the same antibodies. You can also test positive to Lyme disease with or without having it as an active disease. In a day and age when clinical examination, history taking and clinical reasoning are considered sub-par to diagnostic tests, someone with CFS/ME will often get the run around or told nothing is wrong or worse yet that you have psych issues causing it (not from it) or you just to to suck it up. If you run into the clinician who does not practice good examination, history taking and clinical reasoning....run away! Find someone who will believe you and will take the effort to work with you to seek improvement. Also make sure they know their limits and are someone who is not afraid to refer you to someone else when they have exhausted their resources.

    As a side note, there have been new developments in testing of the chemicals, hormones and substances in the brain associated with brain inflamation and immune response. These show great promise in helping diagnosis CFS/ME more accurately and hopefully finding more effective treatments. Even so, the best guide to diagnosing it will be clinical criteria such as the Canadian Criteria ( http://www.name-us.org/defintionspages/DefCCC.htm ).
     
  7. JaimeS

    JaimeS Senior Member

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  8. Mary

    Mary Senior Member

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    @lgibson2017 - unfortunately normal blood work is par for the course and has greatly contributed to us being told that ME/CFS is all in our heads.

    However, the majority of us do have low NK cell function which does show up on blood work but the doctor has to know to test for this. Also, specific viral testing can be useful.

    Most regular doctors know nothing about ME/CFS and don't know what to look for. And of course doctors knowledgeable about ME/CFS are rare. If you cannot see an ME/CFS specialist, you might be better off if you can find an integrative or functional medicine doctor who can check for things most regular docs won't - e.g., adrenal function, thyroid function (beyond the standard tests), nutritional status -. Many of us have had improvement with various supplements - not a cure, but improvement.
     
  9. helen1

    helen1 Senior Member

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    People with ME have many abnormalities as new studies are showing. Most doctors don't know what to test for though and will do standard tests which will likely show few abnormalities.

    ME docs will test for common coinfections and immune abnormalities. These almost always come back abnormal in people with ME. Get yourself to an ME doc if you can and get relevant testing.

    You're not crazy. Most docs just don't know much.

    @lgibson2017
     
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  10. lgibson2017

    lgibson2017

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    I live in Louisiana and am having trouble finding a specialist or specialty clinic for ME; is there a database or list somewhere of them? The closest thing we have in LA is a Rheumatologist specializing in Fibromyalgia.
     
  11. JaimeS

    JaimeS Senior Member

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  12. lnester7

    lnester7 Seven

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    Well depends of the tests you run, Cytokine profile, lymphosite soubset, NK cell number and function, viral titters to the known viruses to reactivate in CFS.... They will show abnormal in most.

    What my doctor explained to me is most tests are run as a ration. so for example if you devide a/b = c ; 10 /20 =0.5 vs 1/2=0.5 where a and b being out of range and low. So when I did all tests not in ration we started to find the issues.

    also, check t3,t4 (as instead of tsh) and B12 and D levels (d125) ......
     
  13. alex3619

    alex3619 Senior Member

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    I think it helps to be clear that nothing typically shows up in regular blood work. Research labs with the right equipment can find lots of things wrong with us.

    Standard tests that show big problems in many patients, but which are not blood tests, include a tilt table test, 1940/1995, a quantitative EEG, 1946 (validation pending, but shown useful in case studies), 2 day CPET, 1949/2007, and a sleep study, 1954. The second year is when the test was validated for ME patients. Brain MRI can also be useful. This year we also expect to see mass spectrometry become available for ME, and several blood tests are in development.

    Tests look at specific things. If what is wrong is not one of those things it will not show up. You cannot diagnose a brain tumor with a stethoscope. There are millions of potential tests, and docs only typically use a small number of those, and most path labs don't run most of the potential tests.
     
    Last edited: Feb 6, 2017
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  14. dhube32

    dhube32

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    Hi Lauren,

    Unfortunately there doesn't seem to be any true way to get concrete proof of ME/CFS as no tests seem to pick it up. My diagnosis process took years and basically became a long process of eliminating every other possible cause of my symptoms. Its been 13 years of receiving normal tests results for me, blood tests and every other kind imaginable. I've found this to be one of the most frustrating parts of the illness. Having doctors tell me that all my test results "look good" for over a decade has become increasingly hard to hear and makes me feel as though people think I'm nuts. I'd love to have a way to get a positive ME/CFS test result just to have some concrete proof once and for all. But alas, that doesn't appear to be a possibility at the moment.

    Take care and keep your head up!
    Denise
     
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  15. Mohawk1995

    Mohawk1995 Senior Member

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    Denise,

    I can tell you that as a parent of one who has suffered with CFS/ME and as a Physical Therapist who has treated numerous people with disorders that don't show up on tests, that this is very real and very devastating for those who suffer from it. I am not qualified to treat it, but I do believe I have a unique perspective on it. The problem is not that the physicians are not intelligent enough. The problem is that this disorder resides in the most complex structure in the universe....people and that some/most physicians are trained to think if it doesn't show on a test it doesn't exist (not to mention the legal consequences of thinking differently). Modern Medicine is good in many ways but definitely not that good! There is hope that new tests will help, but we will still need physicians who can apply strong clinical reasoning, examination and history taking along with being willing to push some boundaries of traditional medicine to help people like you!

    Paul
     
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  16. dhube32

    dhube32

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    Hi Paul,

    I didn't mean to insinuate that the physicians aren't intelligent enough. On paper I appear to be a fairly healthy person and therefore it makes sense that doctors have always told me that everything looked normal. I know what a complex and mysterious disease this is, for doctors and patients alike. It is just unbearably frustrating to be told over and over that all of your test results are normal when you don't feel normal in the slightest. I just hope that there will eventually be a test that will help people suffering with this finally have some sort of validation and concrete proof that this isn't all in their heads.

    Denise
     
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  17. DeceptivelySlow

    DeceptivelySlow

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    Hi Lauren, I have normal blood work as well. I am new to this site. What brought me here is I suffer from what I describe as life altering chronic malaise with associated fatigue exacerbated by exertion. However, in my case I believe my condition stems from nerve damage resulting in loss of proper modulation of my immune system. I have a hunch that the mechanism causing my malaise may play some roll in the ME/CFS puzzle.

    I guess my point being, yes all blood tests I have had are normal, yet I have a known physical problem which seems to be affecting my immune system. The more standard blood tests certainly don’t tell the full story as to what is going on in our bodies.
     
  18. Shawn

    Shawn Senior Member

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    You need to check the CSF
     
  19. IreneF

    IreneF Senior Member

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    I just had a standard workup and it was nearly all normal, except for high hemoglobin and hematocrit. I think this is probably because I am hypovolemic (low blood volume) from POTS or a similar condition (orthostatic intolerance), which is pretty common among people with CFS/ME.

    When my liver was unhappy it was because I was taking Valcyte.

    There is no commonly-available lab test for what we have; it's often diagnosed by ruling out everything else.
     
  20. trishrhymes

    trishrhymes Senior Member

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    We have hope on the horizon - several good biomedical research groups around the world are working on finding out just what is going on in our bodies, including genetic, immunological and metabolomic studies.

    Some are suggesting that there might be a breakthrough quite soon which would enable a biomedical diagnostic test to be developed. When that day comes, we will be able to show our doctors that we really are physically ill.

    Until then, unfortunately for most of us, nothing shows up on our blood tests, but it's still important to have these routine tests to check for other things that might be causing some of our symptoms.

    The thing some doctors don't seem to be able to accept is that not every illness has a biomedical proof, and that lack of evidence of physical illness does not logically prove a lack of physical illness. It is the evidence that is absent, not the illness.

    Best wishes, and keep getting plenty of rest.
     
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