• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What’s the point?

Messages
80
After seeing 2 endos and coming up with nothing, I’ve been seeing a neurologist now. Had brain MRI, probably looking for lesions. Apparently nothing. Had EMG for whatever reason. Nothing.
Today did EEG. Why? Other than looking for possible MS with MRI, what’s the purpose for these other tests. I have symptoms of CFS and and feel like I’m wasting time sometimes with these tests that aren’t doing to find my cause of symptoms.
Any ideas? I’ve got Lymes, hypothyroidism, mononucleosis, sleep, diabetes, cancer ruled out. What’s left?
Thanks.
 

Rebeccare

Moose Enthusiast
Messages
9,060
Location
Massachusetts
I've struggled with this question as well. Over the years I go through phases where I feel like I want to have tests done because I hope that I'll learn something new and find answers. Then I get discouraged because I never seem to learn anything useful, so I stop for a while. I see the doctor for my physical and when I'm sick or hurt, but that's it.

Honestly, I think taking a break from testing can be helpful emotionally as long as your health is stable and there are no big scary things that need to be ruled out. Sometimes doctors just keep testing testing testing because they feel like doing something is better than doing nothing, and they're afraid to say "I don't know."
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
They are handy. They have helped rule out things and in fact can be more handy that you seem to be currently aware of. I used my tests to help vertify to myself that I do have ME and not be just one of those people thrown into the ME/CFS waste basket who will end up finding that they had a wrong diagnoses given.

eg there are certainly abnormalities which can appear on these tests in ME. I have ME abnormalities showing up in quite a few of my test results including on my brain EEGs, 24hr urine cortisol results etc etc. (I think I have about 4-5 ME abnormalities on test results). As these are noted in medical results often as "non specific" abnormalities, they often are not mentioned but if you get copies of your test results you may find out you had these and then compare against what is often found in ME people.

ME can sometimes show up on MRIs too if the doctors know what they are looking for, the lesions are much smaller then in MS and may come and go.

Ask for a copy of all your medical tests .... for for abnormalities commonly found in ME.. there is a page of the canadian consensus ME/CFS document which lists some of these. (I cant remember but possibly the International concensus criteria for ME may also mention these)
 
Messages
80
They are handy. They have helped rule out things and in fact can be more handy that you seem to be currently aware of. I used my tests to help vertify to myself that I do have ME and not be just one of those people thrown into the ME/CFS waste basket who will end up finding that they had a wrong diagnoses given.

eg there are certainly abnormalities which can appear on these tests in ME. I have ME abnormalities showing up in quite a few of my test results including on my brain EEGs, 24hr urine cortisol results etc etc. (I think I have about 4-5 ME abnormalities on test results). As these are noted in medical results often as "non specific" abnormalities, they often are not mentioned but if you get copies of your test results you may find out you had these and then compare against what is often found in ME people.

ME can sometimes show up on MRIs too if the doctors know what they are looking for, the lesions are much smaller then in MS and may come and go.

Ask for a copy of all your medical tests .... for for abnormalities commonly found in ME.. there is a page of the canadian consensus ME/CFS document which lists some of these. (I cant remember but possibly the International concensus criteria for ME may also mention these)
Ok. I see what your saying. That does help.
I’ll have to see if I can get results and maybe MRI copy if I can. Could be interesting.
If you don’t mind, what did you discover from EEG and some of these Cotisol high or low?
 

JES

Senior Member
Messages
1,318
After seeing 2 endos and coming up with nothing, I’ve been seeing a neurologist now. Had brain MRI, probably looking for lesions. Apparently nothing. Had EMG for whatever reason. Nothing.
Today did EEG. Why? Other than looking for possible MS with MRI, what’s the purpose for these other tests. I have symptoms of CFS and and feel like I’m wasting time sometimes with these tests that aren’t doing to find my cause of symptoms.
Any ideas? I’ve got Lymes, hypothyroidism, mononucleosis, sleep, diabetes, cancer ruled out. What’s left?
Thanks.

CFS is a diagnosis by exclusion, so unfortunately they only way to be close to 100% sure that you have CFS is to rule everything else out. So yeah, that would be the only point of doing these tests and in that sense it's not a waste of time.
 
Messages
80
CFS is a diagnosis by exclusion, so unfortunately they only way to be close to 100% sure that you have CFS is to rule everything else out. So yeah, that would be the only point of doing these tests and in that sense it's not a waste of time.
Right.
Can’t think of anything else to rule out now.
Be interesting to see people’s lists of what they all had ruled out before finally getting diagnosis of CFS.