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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Dysautonomia often Autoimmune (cross post)

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by kms1990, Nov 20, 2017.

  1. kms1990

    kms1990

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    For those questioning if their dysautonomia is autoimmune and if IVIG or Ritux might be helpful in their case please review the videos for more information regarding this.

    My personal belief is a lot of CFS is dysautonomia and as noted in these presentations the autoimmunity can have multiple triggers which can be very different from one person to another. (sounds similar to CFS doesn't it?)



     
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  2. Misfit Toy

    Misfit Toy Senior Member

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    It's interesting how it says Sjogrens is the second leading cause of dysautonomia. I have Sjogrens and mast cell.
     
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  3. Diwi9

    Diwi9 Senior Member

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    @kms1990 - Thanks for posting these videos. (Flagging @Gingergrrl - these will interest you.)
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and I bookmarked the post with the videos for the future but realistically will not get to watch them this week.
     
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  5. halcyon

    halcyon Senior Member

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    Definitely watch the Schofield talk, sounds like she sees a lot of people like you. You might even want to try contacting her to see what she thinks of your treatment plan.

    Both talks were very interesting and it sounds like some doctors are starting to see MCAS and autoimmunity/immune mediated dysautonomia as a two way street, where each reinforce the other.

    I also had been having similar thoughts recently about what Dr. Goodman was talking about re: autonomic remodeling. I think this is happening to me as my orthostatic tachycardia has lessened while my orthostatic hypertension has worsened over the last few years.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @halcyon and I will 100% watch the videos as soon as I can. I am blanking on who Dr. Schofield is but am very interested to watch her in the videos.

    Wow, that is fascinating and I have tried to understand the link between POTS and MCAS but can never quite grasp it. I have no doubt that I have autoimmune mediated dysautonomia nor does my doctor. We can't figure out any other explanation for the symptom improvement as the autoantibodies are lowered from IVIG and RTX.

    So your tachy is better but HTN got worse? I haven't seen you post too much lately but always wonder how you are doing and hope that you are doing well.
     
  7. halcyon

    halcyon Senior Member

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    I wouldn't use the word better, my HR just doesn't reach the same highs as often. BP is definitely worse and I am now having to start medication to control it which I'm not thrilled about and I don't think will go well.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Thx for explaining and I am so sorry about having to start the BP med. Do your doctors think auto-antibodies play any role in your case at this point? (I don't mean instead of enterovirus, vs. in addition to it).
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    I watched both videos, which are absolutely phenomenal and thank you so much @kms1990 for posting them! I ended up writing a detailed summary of each video on another board called "Science for ME" or "S4ME" and instead of reposting them here (b/c I write a lot and they are quite lengthy :D) , I am sharing the link.

    Here is the link to the thread in which I wrote the summaries of the two videos... and I hope it works and is helpful to others!

    https://www.s4me.info/index.php?thr...l-activation-in-dysautonomia.1191/#post-21122
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    @Gingergrrl I’m in contact with Dr Schofield, will send you her info
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Wow, thank you so much! I never even thought to ask you but totally should have! You rock :hug::star::star:
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    Just wanted to add, in case this is helpful to anyone, she was very receptive to e-mail and replied quickly. She is not taking new patients and has a two year waiting list :eek:. She also does not do phone consults with patients or their doctors at present b/c of lack of time. But she responded thoroughly to some questions that I had re: autoimmune dysautonomia, and although she of course cannot give medical advice, she felt that I was completely on the right track with my treatment and it did not sound like she would do anything differently than what my doctor is doing.
     

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