The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Extremely upsetting SPECT scan results: brain lesions! What now??

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Apr 13, 2016.

  1. Antares in NYC

    Antares in NYC Senior Member

    I'm so upset and shaken I can't even type this note right. I just read the reports from two tests that I had at a major hospital last week. I haven't talked to any of my doctors yet (waiting lists) but left them voicemails to call me back when they can. The test were conducted to assess my increasing brainfog and worsening cognitive issues, and results of both tests are quite upsetting:

    MRI Spectrography:
    A few nonspecific white matter lesions are noted which could be related to prior ischemic or inflammatory sequela. No mass, mass effect or midline shift. There is no hydrocephalus or acute ischemia. Intracranial flow voids are maintained.
    Impression: Minimal nonspecific white matter lesions are noted which could be related to prior ischemic or inflammatory sequela.

    Nuclear Medicine Brain SPECT Scan:
    Moderate decrease in cerebral cortical perfusion in a heterogeneous pattern. These findings are nonspecific and may be seen with meningitis/encephalitis, Lyme disease or connective tissue disorders such as lupus.​

    I don't even know where to start.
    Am I brain damaged?
    Is this progressive? Will it get worse?
    Is this reversible? Is there a treatment to reverse it or make it better?
    If this is not reversible or it continues to progress, what am I to expect?

    I'm broken down emotionally. I'm extremely upset and scared. I can't even begin to wrap my head around the consequences that these findings may have for the rest of my life.

    If someone knows a bit more about these lesions and decreased cortical blood flow, I would appreciate some advice, next steps, or recommendations of other doctors that I should see. Thanks.
    merylg, Hutan, MeSci and 7 others like this.
  2. Amaya2014

    Amaya2014 Senior Member

    Columbus, GA
    @Antares in NYC I'm so sorry you're going through this and hope you get more answers. I too had nonspecific hyperfusion spots on my MRI. It freaked me out but two neurologists ruled it out as MS lesions.

    My CFS specialist noted it as clinically relevant to ME/CFS. There are studies that support brain involvement in ME/CFS through MRI and PET scans but my understanding is the medical community do not see these signs as diagnostically specific.

    I did get a referral for neuropsych testing. She noted slowed processing speed and significant decomposation with cognitive effort but was able to rule out dementia, early Alzheimer's and other progressive cognitive disorders. Her diagnosis was Organic Brain disorder due to ME/CFS.

    Hope this helps!
    merylg, Izola, MeSci and 6 others like this.
  3. duncan

    duncan Senior Member

    It is scary. I'm sorry you have to experience this. You need to know, though, that many of us have similar results; it almost comes with the territory for a subset. How ridiculous is that?

    I would recommend, as you're already doing, to follow up with your doctors, if only to put your mind at ease.

    As you know, some times when Lyme is involved, lesions dissipate following treatment.
    Last edited: Apr 13, 2016
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  4. anciendaze

    anciendaze Senior Member

    First, this is not evidence of irreversible brain damage or tumors. This is not at all unexpected in ME/CFS, and is evidence of physiological disease.

    Second, the position in which this was done is relevant. You likely have episodic ischemia or hypoperfusion due to changes in posture. This should cause investigation of autonomic problems. Tests for autoantibodies may also be appropriate. If these are found that could lead to specific treatment which will relieve some symptoms.
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  5. Deltrus

    Deltrus Senior Member

    I'd be happy to find something like that. If I'm already ill, finding test results wont make me more ill. In fact, they can be important in helping me get better.

    If I was ill and didn't have any concrete data, then I would be upset.

    1. You will know if you are brain damaged if you notice significant long term impairments. If right now you are not significantly impaired then I doubt it will get significantly worse rapidly, you probably have been living with the lesions for a while.

    2. It can slowly progress, relapse, etc just like CFS. Brain inflammation is related to CFS, has some similar patterns.

    3. Reversible... hmm. Brain lesion study receive a lot of funding and medical science is progressing fast. I'd be hopeful if I were you.

    You can try a no lectin diet, or a no grain diet (other than rice). A lot of these plant proteins can stimulate the immune system in negative ways in people.

    Light exercise within your limits is also good.

    These two things are probably the most general treatments for all diseases, diet and exercise affect all of your cells. The target you are treating is in a fog, hard to understand, so you can only try broad treatments, or attacking from all angles.

    If you keep your digestion smooth as possible, that will also help. Probiotics might help, they make the gut acidic and that makes it hard for bad bacteria and other pathogens to live. A lot of bad microbes in the gut can cause from inflammation.

    You can pretty much treat your disease exactly the same as CFS.
    merylg likes this.
  6. Sandman00747

    Sandman00747 Senior Member

    United States, Kansas

    Antares, Of course follow up with your docs but here's some probable good news. Myself, as well as two other patients that I personally know had these lesions at one time but upon a rescan a year later myself and one of the other two patients had no sign of the lesions and they were diminishing in the other patient. And, after 20 years of suffering with this crap my cognitive skills are almost as good as ever. I took an IQ test a few months ago (while under a mild/moderate recurrence) and still scored 149. I'll take that score without ME/CFS! I used to be a little higher back in graduate school but I'm a whole LOT older now! Please have hope. I have faith you will be fine in time! Take care!
    Last edited: Apr 13, 2016
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    I am not sure that you need to worry unduly about these reports. They both suggest non-specific changes and it is very common for radiologists to report findings like this even if they do not have much in the way of clinical implications. There may be some changes from inflammatory injury in the past but even that I think would be uncertain. You need to discuss the findings with a physician who is familiar with this particular hospitals pattern of reporting.

    Although you are clearly upset and may feel fogged the fact that you can write quite sophisticated sentences without any typos or ambiguities suggests to me that no major damage has occurred.
    merylg, picante, TigerLilea and 13 others like this.
  8. Mrs Sowester

    Mrs Sowester Senior Member

    Hi there, my MRI showed lesions that scared the living wotsits out of me too.
    Before the MRI I was warned that 20% of people have brain abnormalities, but I was still terrified! They were deemed insufficient to be the cause of my cognitive problems and unlikely to be due to MS. I had a lumbar puncture to be certain and that was clear. When my symptoms worsened a year later the MRI was repeated and there was no change in my lesions, this was a huge relief.
    The neurologist told me that radiologists consider one lesion per decade of life normal. I have more that double that.
    I understand there is a sub group of us pwME who have these lesions.
    Obviously you need to talk to your doctor, but in the meantime please try to hold onto the fact that a lot of us have them and they're not a sign of awful things to come.
    merylg, Hutan, MeSci and 7 others like this.
  9. Undisclosed


    White matter lesions are commonly documented on MRI's of the brain. The differential diagnosis of these white matter lesions is very broad and varies based on the age of the patient.

    There are many risk factors -- diabetes mellitus, high blood pressure, high cholesterol, history of heavy smoking, lyme disease, sarcoidosis, some connective tissues diseases, migraine sufferers ... .

    I wouldn't spend a lot of time worrying right now -- results with extensive white matter disease would need to be investigated immediately. Most of the results re: non-specific minimal lesions don't usually cause any issues and could have been present for years. I think you will probably have a clearer picture once you talk to your doctor.
    MeSci, Snow Leopard, merylg and 7 others like this.
  10. actup

    actup Senior Member

    Pacific NW
    I was diagnosed with something very similar after a brain MRI seven years ago. I had been having olfactory hallucinations. It scared me as well as my memory had been in a decline.

    Good news is the original problem occurs only rarely now and my memory has improved significantly( my pacing has gotten much better). Couldn't remember 3 numbers in a row and now my math number line has been reawakened and works pretty well. Best of luck
  11. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    Sorry you're hanging with this news and no Dr. contact. Lucinda Bateman find this frequently, suggests it's a marker. I have non-specific 'stress spots'. Here's a vid from her, not sure where exactly she mentions this.

    2014 vid Dr. Lucinda Bateman Insights from the IACFSME Conference

    Synthesizes conference, emphasis on neuroinflammatory
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  12. Bead Dog

    Bead Dog

    I have these types of lesions too. Also have one larger lesion in the periventricular area (with Dawson's fingers.) In my case, neurologist have not said what the cause is and have not ruled anything in or out. The MRI's of my spine don't show any lesions. The MRI was done one year ago. I'm hoping to get another MRI soon for follow up. Maybe follow up with your doctor as soon as possible and that may ease your worry.
    merylg, Mel9 and actup like this.
  13. barbc56

    barbc56 Senior Member

    Geeze, so sorry you are going through this. Uncertainty about what it means must be awful.

    I have reduced white matter it's age related anf fortunately hasn't increased. My fog is certainly worse.

    I am really surprised you were given the results without an explanation. Do you have Internet access to your health record through your healthcare provider. I do and ityou usually get the results three days after getting the test so the doctor has time to contact you if needed.

    We are not neurologist, so how can it be expected for a patient to understand what this means. Why put you through that anxiety of not knowing?

    Hopefully, it isn't serious. Will keep my fingers crossed for you!

    I take that back. I forgot. I did get the results of an exercise stress test for my heart before seeing my doctor.. There were several anomalies but the resuls did not include what it meant. When I saw my doctor a few weeks later, it turned out it's something common even in young people. The sonogram showed part of my heart was enlarged. A second test was normal. Evidently, a sonogram on your heart may be misread, depending on your position on the table.

    I also have two friends who had the 30 second screening EKG with the result saying a change since the last EKG and a previous heart attack could not be ruled out. This has been happening more than it should as the computer reads the EKG. One went through extensive heart tests. For the other person when the doctor read it consulting with a cardiologist as this was in the ER, the EKG was normal.
    Last edited: Apr 13, 2016
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  14. Hip

    Hip Senior Member

    I think Dr Byron Hyde in Canada focuses on brain lesions and abnormalities in ME/CFS:
    Last edited: Apr 14, 2016
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  15. actup

    actup Senior Member

    Pacific NW
    Great information Hip! I had a white matter lesion diagnosis per MRI six years ago but am doing much better cognitively over past two months. Hoping brain can to some degree regenerate while immune system better behaved.

    I had a dramatic flair over an eight month period last year while trialing cox 2 inhibitors followed by high dose acetaminophen with NAC. I was determined to avoid a pain clinic for fibro and psoriatic arthritis. Feels like in some odd way all of that trauma reset my immune system or maybe the new oxycodone regimen gets all the credit- or could be the gluten free diet I started last month or the high dose vit d or the increased dose of immunoglycans. Have no idea but will enjoy this improvement for as long as it lasts ;-)
    merylg, MeSci and Mel9 like this.
  16. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I'd personally take that as a probably common ME finding as non specific lesions arent uncommon in ME andt we can have other issues in our brains with ME too eg low blood perfusion, declining white matter depending on how long someone has had ME etc (a ME study I was in found that, a follow up study is coming up to be published on it).

    The ME lesions thou, from what Ive heard from many can come and go.

    I suggest for you to read the Canadian Consensus Document booklet so you dont get so worried next time one of the common ME/CFS abnormalities shows up on a test, in that is a page listing the common abnormallities in this illness which may be found. (the link to the Canadian ME/CFS consensus Document booklet is on the SA ME/CFS society website on their main page).
    merylg, actup, helen1 and 6 others like this.
  17. Hip

    Hip Senior Member

    @Antares in NYC
    What you might like to look into is the ability of quinolinic acid to produce brain lesions. Quinolinic acid, which is a potent neurotoxin, is created in the brain as part of the inflammatory process (during inflammation activated microglia convert L-tryptophan into quinolinic acid). 1

    When quinolinic acid is experimentally injected into the brain, it causes lesions to appear. 1 And interestingly, poliovirus induces quinolinic acid, and apparently all the damage resulting from poliomyelitis can be prevented simply by blocking the activity of quinolinic acid. 1

    Quinolinic acid has been found to be significantly elevated in Borrelia infection, with dramatically high levels found in Lyme patients with CNS inflammation. 1

    There are several supplements and drugs that help protect against quinolinic acid-induced neurotoxicity, including:

    Protection Against Quinolinic Acid Neurotoxicity:
    Selenium 1
    Memantine 1
    Verapamil 1
    Rolipram 1
    Minocycline 1
    Acyclovir 1
    Copper at low doses 1
    COX-2 inhibitors (eg: propolis) 1
    Ibuprofen 1
    Dapsone 1
    Saffron 1
    Pyruvate 1
    S-allyl-cysteine (from garlic) 1
    Curcumin 1
    DHEA 1
    EGCG 1
    Last edited: Apr 28, 2017
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  18. Justin30

    Justin30 Senior Member

    Hi Hip,

    Can you list the other supllements or post a link. That would be awesome.

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  19. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

    If it makes you feel any better I have some too. I had a second MRI 5y later and all the same. Is not uncommon for ME patients. This has not change my brain I hope this gives you some hope and tranquility
    merylg, Mrs Sowester, Wayne and 3 others like this.
  20. Justin30

    Justin30 Senior Member

    Are these results showing up on regular MRI or are they present only on MRI SPECTROGRAPHY?

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