Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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CT scan vs. MRI

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by bakercape, Jan 13, 2010.

  1. bakercape

    bakercape Senior Member

    Cape Cod. Mass
    Two years ago I had a severe dizzy spell and was sure I was going to pass out. At the time I was home alone so I called 911 and was taken to the hospital.

    I told the ER doctor I have CFS and I get dizzy alot whne I stand for a while, exercise or mentally exert myself for a long time. I also told him a headache acompanies these symptoms and only laying down and not concentrating on anything makes them better.

    He ordered a CT scan as these were nuerological symptoms. The scan came back normal.

    I have never had an MRI of my brain only the CT scan. IS one better than the other? Are CT scans usually normal in CFS patients?

    Sometimes I feel my symptoms are so nuerological especially when I exhert myself. How can I have a normal CT when I feel like CFS is messing with my brain?
  2. Dr. Yes

    Dr. Yes Shame on You

    Hi bakercape,

    As far as I know, basic CT scans never show anything in ME/CFS. Standard MRI scans rarely do either. These scans have more to do with the structure of your brain, and will only show signs of certain forms of damage. Mild inflammations, for instance, won't show up. The brain imaging techniques that have been most useful in ME/CFS are SPECT scans, PET scans, and functional MRI (f MRI). These tests look at brain function, not structure, focusing on blood flow and/or brain metabolism. Unfortunately, no insurance policies that I know of will cover these tests! Also, not too many radiologists/ doctors know what to look for in their results in ME/CFS patients. Quantitative EEG (qEEG) is supposed to be helpful at finding abnormal brain wave patterns in ME/CFS, but it's a new and rarely used technology (and again, almost never covered). Even neuropsychiatric testing, which can also be helpful, isn't often covered, and the practitioner has to be familiar with the common deficits in this disease.

    So, long story short, very few ME/CFS patients have structural abnormalities that will show up on a standard MRI (and definitely not on a CT); again, some of that depends on the knowledge of the interpreting doctor. It seems that we either have very mild structural damage (lesions/ inflammation) or more likely 'only' problems with brain functioning.

    I've passed out at home (alone, too!) on more than one occasion, and have been dizzy for pretty much the last few years. (I remember 'coming to' and having to crawl slowly back to my room when I was even able to move). A recent standard brain MRI and EEG were normal, despite a LOT of cognitive problems, etc... However, I have been found to have orthostatic hypotension (neurally mediated) and vasovagal syncope (fainting due to autonomic failure); don't know how much of my symptoms are due those things, but they're bound to contribute something.

    Have you ever been tested for orthostatic intolerance of any kind? Any blood pressure irregularities or sudden rapid heartbeat after standing up? Those things are very common in ME/CFS, and are easy enough to test for in the office (if your doctor knows what he's doing); a tilt table test is the usual way to diagnose things like vasovagal syncope.
  3. bakercape

    bakercape Senior Member

    Cape Cod. Mass

    for the info Dr. Yes.

    Sorry you actually passed out alone at home. That is scary!

    The nuerological symptoms of this illness are so bizarre.

    I have never been tested for NMH but one doctor treated me with florinef and salt/water. It was initially helpful but effect seemed to wear off over a few months and I gave up on it. Maybe I will pusue the NMH connection when I get my energy and will to go back to the doctor back.
  4. annunziata

    annunziata Senior Member

    Hudson Valley
    Hi Bakercape, Just wanted to add that I agree with DrYes -- I have had an MRI that was normal, but my SPECT scan showed 'severe hypoperfusion' -- I do think it's important to get a SPECT scan done at a good institution, too; mine was done at Cornell Weill in NYC.

  5. Wayne

    Wayne Senior Member

    Ashland, Oregon
    SPECT Scans - Vertigo Issues


    This thread caught my interest because I'm currently experiencing one of my worst episodes of vertigo/dizziness I've ever had. Not sure what to make of it, and what to expect as I go into my nightime hours.

    I'm suspecting it may be part of an "unwinding" I'm going through. I got back from a 3-month trip last week, and just this afternoon got a couple hours of the best sleep I've had since getting back. Ironically, I wake up with serious vertigo. An unwinding process?

    Dr. Yes, great information. I've wondered about much of what you posted. Nice to have all this information and descriptions all together in one nice concise post. Thank you.

    Hi Amy,

    I was wondering whether your insurance covered your SPECT scan. If not, I was wondering how much it cost to have it done. Also, was wondering what hypoperfusion is, and whether this is a common characteristic in people with ME/CFS? Thanks.


    ETA - I've heard that if a person can get a scan that shows affected brain function, it can help immensely when applying for disability benefits.
  6. Athene


    Have you had a tilt test to check your heart? All the symptoms you describe are compatible with orthostatic intolerance and a tilt test would show up what is going on.
    Dr. yes has given a very good explanation of MRI scans. They can shopw up hypoperfusion but only if it is going on during the test. Since you normally lie down and concentrate on nothing during an MRI they tend not to show up anything!
  7. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
  8. Sushi

    Sushi Moderation Resource Albuquerque

    I have had a tilt table test which was read by my dysautonomia specialist (and covered by insurance). He is good (he has it himself:ashamed: and is able to analyze brain wave patterns from the EEG. But I agree with Dr. Yes--not many would have a clue about that. I have also found that OI and vertigo manifested differently for me and had different causes. A major vertigo problem (a week of rooms flipping) was associated with undergoing intense IV chelation and other methods of detox. On the other hand, my OI has been there on and off all my life. Whenever my body is extra stressed, the OI is worse. It is under control now due to a bunch of protocols to normalize biochemistry and to "get the crap out."

  9. bakercape

    bakercape Senior Member

    Cape Cod. Mass

    for the respondes.

    I've never had a tilt test but have often thought I should get one. I have a stupid 1000 dollar deductible on my health insurance for testing so that's the reason I haven't pursued it lately.

    I've been really struggling to work FT lately and don't know if I can do it too much longer. I might try to get the test in hopes of finding some kind of test that would show objective dysfunction in my body in case I need to get disability in the future.

    wishing you all well and thanks again for the info and support. This website is a great source of info and support.
  10. klutzo

    klutzo Senior Member

    I would check with your insurance before assuming something is not covered. I had both Neuropsychological testing and a QEEG way back in 1994, and both were totally covered by Medicare. I also had a BEAM scan at that time, showing hypoperfusion, and that was covered as well.

  11. susan

    susan Senior Member

    Gold Coast Australia
    I went thru the vertigo thing a few months ago and it was associated with stress....having a few friends over and talking for a few hrs. Sleep was not good around this period. It settled down.
  12. Tammie

    Tammie Senior Member

    Woodridge, IL

    hypoperfusion is decreased blood flow to the brain.....can cause cell damage and cell death, can lead to brain lesions (also called unidetified bright objects - yes that is serioulsy what they are called)....sometimes the bright spots on the brain disappear, though, which leads me to believe that the damage that can be casued from hypoperfusion can be reversable.....oh, and this is a common CFS thing

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