International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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2018 Dysautonomia International Conference: SFN, POTS, MCAS, Vagus Nerve Stimulation & CSF Leak

Discussion in 'Other Health News and Research' started by Gingergrrl, Jul 22, 2018.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I searched if this was already posted and did not see it (moderators, please merge if there is already an existing thread)! These are the links to @Cort's two-part blog from the 2018 Dysautonomia International Conference in Nashville. Below the links are a few highlights (but there is much more and definitely worth reading)! I would LOVE to be able to attend this conference in the future.

    https://www.healthrising.org/blog/2...omia-international-pots-sfn-mcas-vagus-nerve/

    https://www.healthrising.org/blog/2...l-spinal-fluid-leak-pots-me-cfs-fibromyalgia/

    There is much more detail in the blogs including an additional section on Vagus Nerve Stimulation and CSF leaks. It is definitely worth reading!
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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  3. Lalia

    Lalia

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    Thank you for tagging @Gingergrrl, I can’t wait to read the full articles tonight. I wouldn’t be surprised at all if a big subset of CFS ends up being several yet-to-be classified autoimmune diseases.

    Just got my recent blood results which show positive smooth muscle abs, so looking like autoimmune hepatitis. It doesn’t explain the severity or breadth of my symptoms tho, waiting to get results for autoimmune gastrointestinal dysmotility - really interested to see if those abs come back positive too.
     
  4. crypt0cu1t

    crypt0cu1t IG: @skagginwagon

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    Thanks for tagging me @Gingergrrl I'm not sure if I have POTS, but I do believe a percentage of us have undiagnosed autoimmune issues.

    I am in the process of getting high dose IVIG approved for my autoantibodies and Im awaiting another test for antiganglioside antibodies. so hopefully my insurance doesn't give me any issues with it..
     
  5. Forçe e Honra

    Forçe e Honra Senior Member

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    @Gingergrrl - Thank you so much for tagging me! It will take me some time to read everything but wow.

    Reading the part about SNF which I didn't really know was a big deal was - surprising. Especially since I am getting biopsied for it (soon, I hope). Woa.

    The big news in POTS has been the discovery of autoantibodies that are whacking a receptor (adrenergic-1 receptor) in the legs that causes the veins in our legs to narrow or vasconstrict as we stand.
    This is the only one I tested positive for on Cell Trend (the only other was "at risk" for M4). Wow

    While Grubb hasn’t been particularly happy about the treatments available, he’s very high on Ivabradine... Grubb said Ivabradine has a 75% success rate: that’s unheard of in this complex condition..
    I'm still waiting for insurance approval for this. I really, really hope it is approved soon.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I still have no idea what ME/CFS is going to turn out to be (at the root cause, I mean) but I suspect it is going to involve many different sub-groups and at least one is going to be auto-immune (just my personal opinion).

    Wow, @Lalia, what does that mean? What is the treatment for autoimmune hepatitis?

    I would almost just be prepared that your insurance is going to give you a hard time and then if it doesn't, it will be a nice surprise!

    I thought it was interesting that the blog said that Dr. K was finding SFN in about 80% of his patients. I was never tested for it but I don't really match with the symptoms and once we found that I had 11 autoantibodies, I think he felt it wouldn't add anything to keep testing b/c it would not change my treatment plan.

    I did have a QSART test (as part of a bunch of autonomic testing) which showed neuropathy to the long branch nerves of the feet, and abnormal lack of sweating, but then absolutely nothing was proposed or recommended for it (this was from a Neuro and not Dr. K). I think the blog (or something else I read recently?) said that it didn't even recommend QSART testing vs. the biopsy that you are going to have. I'll have to find that quote again.

    That is interesting. I tested positive for 7/9 Cell Trend (in 2016) and I will be re-doing the tests in Sept, but all eleven this time since there are now two new tests since I did them in 2016.

    I hope you are approved soon (for Ivabradine) and am curious to hear how it goes.
     
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  7. Forçe e Honra

    Forçe e Honra Senior Member

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    I ended up reading both links and found it very interesting, as well. Yes, it was recommended not to do the QSART.

    It will be very interesting to see what the difference it now!

    Thank you so much. POTS sx are one of the most debilitating - as soon as I sit up, I feel it then standing up I am almost out of breath immediately, along with all the other yucky things (faint, dizzy, tingly feet, lead feet, shaky, etc.). It makes my life pretty impossible. I really, really hope it is approved and is not too expensive and it works. It seems effective in such a large percentage of patients I am hopeful.
     
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