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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brain autoantibody screening

Discussion in 'Immunological' started by 62milestogojoe, Aug 15, 2017.

  1. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi, Just interested if any PR members have ever undertaken a screen for brain autoantibodies. Thanks
     
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  2. Jenny

    Jenny Senior Member

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    I had blood tests at the Breakspear about 10 years ago which purported to show astronomical amounts of lots of different types. But every other doctor I showed them to said they were nonsense.
     
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  3. pattismith

    pattismith Senior Member

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    I did, all is negative:

    anti-GABA b
    anti-Glycine
    anti-NMDAR
    anti-AMPAR
    anti-DPPX

    anti-Hu
    anti-Yo
    anti-Ri
    anti-Ma2
    anti-CV2
    anti-amphysin
     
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  4. mrquasar

    mrquasar Senior Member

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    Blood or CSF tests?
     
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  5. pattismith

    pattismith Senior Member

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    blood
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    Patti, were your tests done by Mayo or Oxford or somewhere else?

    Also, @62milestogojoe, I am tagging @Shawn who might be able to give you some feedback on this topic.
     
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  7. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi Patti could you say how many years ago you were tested? I ask because new Ab is coming on line all the time according to the Immunology dep't at the biomed centre I work at. Thanks for the comprehensive list.
     
  8. pattismith

    pattismith Senior Member

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    yes it was a month ago, in a reliable laboratory in my country (France) @62milestogojoe ;)
     
  9. 62milestogojoe

    62milestogojoe What's a forum then?

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    Thanks, that's interesting and relevant:)
     
  10. 62milestogojoe

    62milestogojoe What's a forum then?

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    Sorry, just one more question Patti. Would you describe your symptoms at the time of the test as mild, moderate or severe? I don't know if this has any relevance to test results.
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    @Jenny do you remember which specific autoantibodies showed astronomical levels from Breakspear? I assume Breakspear is a reliable lab (I am not too familiar with it) but assuming that it is, how did they interpret such high levels and what type of treatment did they propose (even though the other doctors felt it was nonsense). Did you feel that the test results correlated with your symptoms? Thanks in advance for any info and I realize it was ten yrs ago so you may not remember!
     
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  12. Jenny

    Jenny Senior Member

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    Hi gg. The lab was Immunosciences and the test was Panel C. I kept the paperwork but don't have the results to hand as I'm away from home at the moment. They didn't know how to interpret the test results and the only treatment recommended was to play sport, particularly tennis! And this was when I could barely sit up for more than 5 minutes! I can't say how the results correlated with symptoms as I only had the test once, though at that point my worst symptoms were neurological.
     
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  13. pattismith

    pattismith Senior Member

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    well I had a course of pulsed antibiotics from february to May (4 months), so I don't know if this is important.
    I don't know if I was a ME patient, but I was not severe, and I feel much better these last few weeks. (I'm ill for 35 years, but no diagnosis)
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Good Lord, they discovered you had brain autoantibodies and the "treatment" was to play tennis? I want to say that I have never heard such nonsense before but sadly I have. I am hoping you have since found a new doctor.
     
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  15. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi, I'll try and help, forgive me if I'm talking to the wrong person but i have a splitting headache and vertigo and am rather confused myself! From what I can see from everyone's conversation in my own muddled brain...

    The lab in question (Immunosciences) doesn't offer brain autoantibodies testing in their catalog, indeed from memory Prof V is a viral expert and interested in this in relation to CFS. He may well have had panel C, but it is no longer advertised. I am guessing the elevations were of something else because anyone who had massive levels of brain autoantibodies would be dead.

    Symptoms and signs of a massive brain autoimmune attack may include the following:

    *Extreme headache, nausea, vertigo - when conscious.
    *Acute neuropsychiatric crisis making you literally 'mad' = delusional, hallucinations, confusion, speaking in tongues.
    *Acute Autoimmune Autonomic Failure = death
    *Neuromuscular weakness = death if affecting breathing muscles.
    *Cardiac Arrhythmia and associated electrolyte imbalances = potential death.
    *Coma = death is not in hospital.
    *Status epilepticus = death if sustained and not hospitalised.

    I've had the unfortunate pleasure of witnessing the above, as I have spent a long time in hospital myself, by chance, observing patients in a neuroimmune psychiatric crisis and you observe them as they walk into your room and try and throttle you, or start talking to you as they believe you're someone else and then attack you again or laugh, spin around and hug the wall like a spider, and then freeze in time.

    They also do rather worrying things like survive being in ICU, getting out of bed, peeing on you, assaulting you, thinking they're out in town with you, assaulting you again, collapsing, waking up and walking around, vomiting, going back to the wrong bed, screaming for 6 hours and needing sedating, and then stopping breathing and causing total chaos on ward, as no one else can cope with caring for them and each area of medicine: ICU, neurology,cardiology, psychiatry is unsure who gets the patient or how to manage them. If 'stable' live signs, they get dumped in a neuropsych ward.

    Not wanting to scare anyone, but put it in context. 'Foreign' family members in Western hospitals unaware this is a neurological attack on the brain, mistakenly believe these patients are possessed by the devil or are witches. You literally find family members holding their crucifixes. Rather concerningly, and to put it in context, this is meant to be the 'recovery' phase of someone whose brain has become deranged by huge autoimmune issues, e.g. psychosis.

    That is what very high levels of brain autoimmune attack does to a human, it leads to encephalitis and makes you go crazy, and that's if you're lucky.
     
    Last edited: Aug 15, 2017
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Research 1st and I was curious if you have read "The Girl on the 6th Floor" which is a really good true story of a girl with anti NMDA autoantibodies as told through her father's perspective. I was definitely referring to these type of auto-abs when I said "brain autoantibodies" which is why I was confused by the poster who said she had astronomical amounts of them and was told to play tennis as the treatment. I am not doubting her story but just wanted more info b/c my understanding is that untreated, these autoantibodies will most likely kill you.
     
  17. Jenny

    Jenny Senior Member

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    I can't check the exact terms used to refer to the auto-antibodies I was tested for as I don't have the results to hand. However I'm pretty sure the general term used was 'neurological auto-antibodies' and I was very high on several different types.
     
    Last edited: Aug 16, 2017
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  18. Gingergrrl

    Gingergrrl Senior Member

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    I think there are a lot of confusing terms for these autoantibodies including "neuronal" and "paraneoplastic" (which have both been used to describe my case) but I do not have any of the actual brain or NMDA/encephalitis antibodies which I think the original poster was asking about (but I could be wrong)!
     
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  19. 62milestogojoe

    62milestogojoe What's a forum then?

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    I'll post some findings later, you are right, there is confusion. I'll scan some of the kit inserts from the immunology department at work-there have been only 3 ME directly associated auto Ab elicited to this date I believe in a German study.
     
  20. kangaSue

    kangaSue Senior Member

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