Doubting your Diagnosis: How to rule out all other possible Diseases

[TheMoonIsBlue]

Hello!

I didn't know where to post this.

I am at the point where I am sure many others have been.

I don't feel that I have ever had a FULL, Thorough evaluation to rule out all the other hundreds of possible diseases, imbalances, etc. that could either being co-existing with my ME/CFS, or I go through phases where I doubt my ME/CFS diagnosis altogether.

Don't get me wrong- I've seen doctors! And had a lot of tests

I have read the CCC time and time again, the new international criteria, and I do fit it. But......... My question: Is there any paper by a known clinician like Bryon Hyde that basically lists ALL the other diseases that need to be ruled out (or could be co-existing) before an ME diagnosis can be made?

I really wonder if there couldn't be something either major or minor that has been overlooked, not tested for, that is essential! But I don't know what or how to proceed. Like for example, "ATypical MS", or "Cancer of the CNS" (how is THAT diagnosed?)

Like wise, afterwards, should a patient proceed with tests for ME like brain spects? Could these be useful in other diagnosis also?

I thought there was a post a while back, with a lot of tests recommended (by Hyde perhaps?) but I am not sure where it is.


Thanks for reading and any help.

 

[TheMoonIsBlue]

I was also wondering if anyone has read the book "Missed Diagnosis" by Bryon Hyde. Was it helpful in getting doctors to order tests?

 

[taniaaust1]

Like wise, afterwards, should a patient proceed with tests for ME like brain spects? Could these be useful in other diagnosis also?

I thought there was a post a while back, with a lot of tests recommended (by Hyde perhaps?) but I am not sure where it is.


Thanks for reading and any help.

I wasnt completely willing to accept my ME/CFS diagnoses thou I was diagnosed separately by three different ME/CFS specialists till I also had some abnormal test results that also were relevent to ME. I figured that if I did have ME, some of the abnormalities should be able to be found. (Abnormalities started showing up easily in my tests as soon as ones done for ME abnormalities started being done eg Rombergs, abnormal EEGS, hyperreflexia etc.. which was a relief after having so many tests came back ok).
*Always ask for your test results as many doctors will dismiss abnormalities they dont understand themselves and ignore abnormal results esp "unspecific abnormalities"

I do suggest you try to get similar to help give you more of a peace of mind. Some of them could also thou be useful for other diagnoses too as most are non specific abnormalities which can also happen in other things.

You can find a good list of ME tests on page 18 of http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

 

[santi]

First, if no doctor did, you may build a "tree map" with all possible diseases you think you could have, and discard them one by one. You can try first with diseases than can be easily diagnosed, like VIH, Hepatitis A/B/C, Syphilis, and so on (usually serology tests are near 100 trustworthy in these specific diseases, check for others). You can check for virus, bacteria, fungus, and parasite (protozoa), the four main type of infectious agents. Then you go moving to more difficult to diagnose illness. Check also all physical symptoms. It's difficult and you need to learn lot of things but you have to do it by yourself. Primarily, check some doctors in first place as a first stage strategy, then may come up with things because of years of experience that you wouldn't realize.

Then, do not commit risk behaviors than can carry you to get some new diseases while you are looking for the other one, for example having risky sex, taking drugs, exposing to chemical agents, having physical accidents, I mean, so that you cannot assign the disease to things that could happen from now on. This is important in order not to mix old symptoms and analysis results with the new ones.

 

[rlc]

Hi TheMoonIsBlue, dont know if youve seen this, but it from the complexities of diagnosis by Dr Byron Hyde link http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf its a list of tests he recommends that either finds or leads to more tests that help people who have been misdiagnosed with ME get the right diagnosis. He says he is able to find out what is really wrong with 25% of his patients using these tests.

1. Routine CBC with sedimentation, blood smear, ferritin, and IBC. Many patients have a
significant ferritin and IBC anomaly with normal Hb and Ht.
2. Eosinophil count.
3. Before ordering B12, check with the patient, who often is consuming vast amounts of B12 in
vitamin combinations that will give abnormal highs.
4. Urinalysis and culture.
5. Immune and protein electrophoresis.
6. Immune panel only if it can be done in the immediate vicinity.
7. TSH, FT3, FT4, and thyroid antibody tests.
8. Thyroid ultrasound must be done on all patients. In the past two years, I have diagnosed six cases
of thyroid malignancy with ultrasound. Often, these patients have normal serum thyroid tests.
9. Parathyroid Ab, Ca, and Ph.
10. Complete lipid profile.
11. HIV 1 and 2, treponema antibodies, hepatitis B (surface and core ab) and C, toxoplasmosis,
histoplasmosis, Lyme disease.
12. Tuberculin skin test for all patients who have not received immunization.
13. Stools for parasites, ova, and blood x 3.
14. SGOT (AST), SGPT (ALT), bilirubin, BUN, uric acid.
15. ANA and rheumatoid battery if suggested.
16. PA and lateral X-ray of chest and X-ray of sella tursica and sinuses.
17. Fasting and 3-hour glucose and glucose tolerance if indicated.
18. Smooth and striated muscle ab and mitochondria ab.
19. Street drug profile to include cannabis, cocaine, LSD, and so on.
20. Prostate specific antigen (PSA) on all males over 25.

He picks up another 25% of wrong diagnosed patients with these tests

Visual carotid Doppler from aortic arch
Visual transcranial Doppler to include vertebral and basilar arteries
Thyroid ultrasound
Echocardiogram and Doppler

He explains some other things that might need to be done later in the article.

Its a long article, put well worth the read if you want to know what testing should be done to rule out other diseases.

In these articles by Dr Shirwan a Mirza he mentions some other tests that need to be done which Dr Hyde dosent mention in the above article and explains that the reference ranges are wrong on quite a few tests leading to a lot of misdiagnoses

Scroll down these pages to find. The myth of chronic fatigue syndrome
http://www.bmj.com/content/334/7605/1221.extract/reply

Chronic fatigue syndrome NICE and CDC miss the boat
http://www.bmj.com/content/335/7617/446/reply

A judicious evaluation of unexplained symptoms
http://www.bmj.com/content/336/7653/1124/reply

the tests that he adds that Dr Hyde doesnt mention in the above list are
Morning Cortisol
ACTH
Copper
Lead
Comprehensive Metabolic Panel
Magnesium
Tests for Porphyria
Tests for celiac
Tests for sleep apnoea
Vitamin D (which he explains that all the labs are using out of date and very wrong reference ranges should be between 32-100ng/ml)
Transferrin saturation (a lot more accurate for picking up diseases like hemochromatosis then using ferritin)
Free testosterone by dialysis method
LH (Luteinizing hormone)
The tests the DR Hyde does but Dr Mirza explains the reference ranges are wrong are
B12 should be 300-1000pg/ml
TSH should be 0.3-2.5
Fasting plasma glucose should be <100 mg/dl (5.5 mmol/l)
Postprandial plasma glucose should be <140 mg/dl (7.7 mmol/l)at 30-minute, 60-minute, 90-minute, and 120-minute.
Romberg test

Getting all these tests done should find the cause in just about everyone who has wrongly been diagnosed with ME
Maybe if you have a helpful doctor they would do any of these tests that you havent already had done. And maybe they would read the articles and get an idea of what they should be doing.

Totally agree with Taniaaust1 make sure you get copies of all tests youve had done, the Drs ignore things all the time and something important might have been missed!

There are other things that get missed because doctors dont take them seriously like Candida, adrenal fatigue and various subclinical mineral deficiencies like magnesium and zinc etc because standard medical tests arent sensitive enough to pick them up, but a competent naturopath should be able to fix all that up.

Hope this helps you and anyone else reading, its really important to make sure that everything has been ruled out just in case, shame doctors dont have to do all these tests before they can hand out CFS and ME diagnoses!

All the best

 

[Mya Symons]

Were any of you sent to an infectious disease doctor to rule out viruses or bacterial infections as the cause of your CFS? I wasn't, but I was sent to every other specialist in the world. A neurologist, an endocrinologist, a rhuematologist, an osteo doctor, a radiologist, etc. Like most of us, I had swollen lymph nodes off and on for years. Wouldn't common sense say that our GP should have sent us to an infectious disease doctor? Wouldn't an infectious disease doctor be the best doctor to "rule other illnesses out"?

If you want to rule all other illnesses out, I think you would need to go to all the specialists I was sent to plus an infectious disease doctor.

 

[floydguy]

The other trick is to get the tests done by MDs and centers that are not bought and sold for by the insurance industry. As Hyde notes, MRIs, neuropsych testing, etc. may be a waste of time and money if it is being done by the random person. There are very, very few people out there who will bother conducting the proper tests in a competent way. There is serious "Chinese Wall" problem going on where the PCP refers you to specialists who aren't equipped to deal with anything that doesn't smack them aside the face. The PCP then takes their assessments at face value and then tells the patients they can't be helped. It would be extremely helpful if we could put together a list of people like Hyde who conduct careful testing and know how to interpret results.