Phoenix Rising tells QMUL: release the PACE trial data
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Research on how adrenergic & muscarinic receptor antibodies cause symptoms in POTS, OH and CFS

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Lolinda, Sep 5, 2016.

  1. kangaSue

    kangaSue Senior Member

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    Having a paraneoplastic syndrome involves having anti-neuronal antibodies so they can get referred to as paraneoplastic antibodies but you can have anti-neuronal antibodies without having a paraneoplastic syndrome.
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much for explaining this @kangaSue! So if I have those two auto-antibodies, would you say it is most accurate to say that I have anti-neuronal antibodies (vs. paraneoplastic) since so far, there is no cancer found to indicate that I have a Paraneoplastic syndrome?

    I've heard of cases where there were just a few cancer cells and the body destroyed them before any tumor/cancer could be detected but the antibodies still got produced. I have absolutely no idea if this occurred in my case but would that be a more accurate scenario to also say "paraneoplastic abs" vs. "anti-neuronal abs"?

    Thanks again!
     
  3. kangaSue

    kangaSue Senior Member

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    Personally, I think it's something of a misnomer to refer to it as paraneoplastic antibodies and I would just call it as anti-neuronal antibodies. According to the literature, if you have had the anti-neuronal antibodies for more that 4 years, chances are very high that it is not a paraneoplastic syndrome so then the paraneoplastic abs term no longer applies
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, KS, and that is incredibly helpful. I have been referring to my auto-antibodies as "paraneoplastic" b/c this is the term that the doctor used who ran the tests (who is not my regular doctor and not someone I will ever be seeing again). I think I am going to use "anti-neuronal" from now on unless I forget b/c I am so used to the other term.

    In my case, I had the auto-antibodies on the test in Feb 2016 (so 100% I have had them for one year) but I was never tested prior to this so I do not actually know how long I have had them. I have heard that you should have the cancer checks for up to five years before you can rule this out but this seems like a very long time to me to keep exposing yourself to high doses of radiation.

    My main doc (and some very smart friends!) all feel that since I have 11 auto-antibodies total (and not all of them are anti-neuronal like the two Hashimoto's Abs), that it is more autoimmune chaos vs. a cancer/paraneoplastic syndrome (where you are more likely to just have one or maybe two auto-abs total). This makes sense to me so I am not obsessing about the cancer but at the same time, it is often in the back of my mind on some level and I will continue the lung cancer check at least for 2017.
     
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  5. kms1990

    kms1990

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    Thank you both for your replys.

    @Gingergrrl - I believe paraneoplastic refers to a syndrome caused by cancer. The cancer causes autoantibodies itself and produces them. From some of the recent medical reviews I have read, the paraneoplastic antibodies are much more "insidious" and damaging and can cause long term irreversible damage very quick. IE/ weeks.

    It seems like the autoantibodies that are anti-neuronal but NOT caused by cancer are then not paraneoplastic. Instead they may be very similar but produced at lower levels, or the same but caused by the immune system instead of tumors. In these cases it seems treatment helps and sometimes even reverses the disease, whereas with the paraneoplastic syndrome things go down hill very quickly and sometimes even treatment does not help.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I had not heard that and read some stuff (back when I was first diagnosed w/these Auto Abs), that someone could have a paraneoplastic syndrome for up to five years before any cancer is detected. This never quite made sense to me and I still find it confusing!

    That makes more sense to me and I am hoping mine are the non-cancerous, anti-neuronal ones!

    Maybe this is why I have had improvements from high dose IVIG? No doctor has said that I have a paraneoplastic syndrome (PNS) but they have said that I have paraneoplastic auto-antibodies. I think different docs just use different terms and this entire concept is still relatively new.
     
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  7. keenly

    keenly Senior Member

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    Who is the best German doc to see regarding this?
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    I do not know the answer but if you call Dr. Heidecke (the head of Cell Trend Lab) I am pretty sure he could give you some referrals once you have had the testing.
     
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  9. pibee

    pibee

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    I didnt test much except CellTrend, Hashimoto ab, and ENA/ANA. I'm positive for 10 of those (8 CellTrend, Anti-TPO and SS-A).
    I am very convinced my dad had paraneoplastic syndrome, and even my uncle who died recently. My dad developed psychotic symptoms at age 45 first time (which is a red flag when accepted in mental institution to screen for cancers, which they didnt), and he was there on and off for 2 years. Since he was war veteran they were going in a direction of PTSD, but it was long since war and it didnt fit clinical picture so the conclusion was it's more than PTSD. He died from lung cancer within 2 years, and lung cancer is especially known to cause paraneoplastic syndrome.
    Very similar thing happened to my uncle, mom's brother, at age 60, first psychiatry, within 1-2 years death from lung cancer.


    So it doesnt surprise me I have so high anti-neuronal scores, especially because I have big psychiatric and cognitive (more than CFS brain fog) component.

    I'd even say after a bit of reading my very high M1, M4 numbers could be more linked to mental symptoms than to CFS. Even though I have also CFS, it is not extreme, more moderate.

    Many studies on significance of M1 and M4 in psychoticand cognitive functions disorders

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3913542/

    The efficacy of AChEIs observed in patients with AD highlights the potential of cholinergic modulation in treating both cognitive- and psychosis-related behavioral disturbances. Furthermore, administration of nonselective muscarinic antagonists can induce cognitive deficits and psychosis in humans,16,37 indicating that mAChR activation may provide pro-cognitive and antipsychotic efficacy. Accordingly, several mAChR agonists have been developed and have entered clinical testing with the goal of ameliorating the behavioral and cognitive deficits observed in numerous psychiatric diseases. Of these, the M1/M4-preferring agonist xanomeline was the only one to progress to a phase III clinical trial, where it was assessed for efficacy in ameliorating cognitive deficits observed in AD patients. While xanomeline showed a trend toward improving cognitive function in these patients, this effect did not reach statistical significance.
     
    Last edited: Oct 15, 2017
  10. Gingergrrl

    Gingergrrl Senior Member

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    @pibee, I wanted you to know that I finally got a chance to reply to your PM and apologize that it took me so long!
     
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  11. kangaSue

    kangaSue Senior Member

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    You might want to consider getting the equivalent of the Mayo ENS1 panel run. It covers all the main antibodies known to be related to a paraneoplastic syndrome but also checks for NMDA receptor antibodies which can cause cognitive and psychiatric issues too.
    https://www.mayomedicallaboratories.com/test-catalog/Overview/48401
     
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