A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Skeletal muscle channelopathy (Na or Ca) management

Discussion in 'Other Health News and Research' started by pattismith, Nov 24, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    Good luck and I hope that you can find a comparable panel in Europe. Everything you wrote after that sentence is over my head LOL :bang-head:
     
  2. kangaSue

    kangaSue Senior Member

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    There are 4 types of voltage gated CA+ channels and then there's ten cav sub-types within the 4 VGCC's but that's a deeper layer that we don't really need to worry about I don't think when you already know what type your antibody is.

    Actually, I don't recall if you have tried Mestinon before but came across an interesting article about this med that will interest you where it says ;
    [The authors proposed that calcium channel problems perhaps caused by antibodies were impairing acetylcholine release at the neuromuscular junction in their patients. They suggested that Epstein-Barr virus may induce B-cells to produce antibodies which then cross-reacted with the calcium channels in the nerves. The inhibited calcium channels reduced acteylcholine release which in turn caused muscle weakness, fatigue and autonomic nervous system dysfunction.]
    https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    "Does "cav" mean calcium voltage or something else when you are referring to the ten cav sub-types?

    I actually did try Mestinon one time at the end of 2014 (only 1/8 of a pill) and it did not go well. I do not know for sure what would happen if I were to try it again almost three years later but am very hesitant. It gave me respiratory depression to the point that I considered going to the ER but the episode passed on it's own. My doctor had wanted me to try it for POTS (which I thought was a good suggestion and I was curious to try it) but I did not tolerate the side effects at even a fraction of the dose he prescribed. I told him what happened, at that time, and he told me never to take it again.
     
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  4. pattismith

    pattismith Senior Member

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    This is really interesting! I do think some calcium channels are altered in ME/CFS, it could be from auto-antibodies like for Ginger, but it could be from an induced general hypometabolism (hibernation-like).
    Thank you for sharing this article, it is such a good one. It seems that Mestinon is worth a try!:thumbsup:

    Edit: Mestinon is at first a drug used for Myasthenia Gravis, and Mysthenia G patients are worsen when blood potassium levels is low. Seems like all the pathologies involving neuro-muscular junction are sensitive to low blood potassium....
     
    Last edited: Nov 27, 2017
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  5. Jenny TipsforME

    Jenny TipsforME Senior Member

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  6. Jenny TipsforME

    Jenny TipsforME Senior Member

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    BTW re mestinon I tried to get it for POTS but my POTS doctor said no it’s for myasthenia gravis. So I got tested for myasthenia gravis, but I don’t have that, so no mestinon for me...
     
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  7. kangaSue

    kangaSue Senior Member

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    I've never given it any great thought before and always just assumed it meant "calcium voltage" as in, relating to voltage gated calcium channels.
    O.K.
     
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  8. kangaSue

    kangaSue Senior Member

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    Mestinon is a fairly common med for Neurologists to dole out for Autonomic Neuropathy too and a lot of GI's will give it a try for GI dysmotility issues when nothing else is working because it helps with function of both muscles and nerves. I was tried on it for both of the above conditions. Didn't help though and like Gingergrrl, I have VGCC antibodies but only in the "high normal" range, if such a thing exists with having a chronic disorder of some sort..
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    I still find this so strange that you have the autoantibodies but they consider it "high normal" vs. mine were flagged as "abnormal" and most people tested are 0.0 (like I was for the other VGCC auto-antibodies). Were you ever tested a second time to see if it had changed?
     
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  10. Jenny TipsforME

    Jenny TipsforME Senior Member

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    There’s a lot of variation in how doctors interpret things isn’t there? The test may be objective but the cut off for ab/normal is socially constructed.

    Another thing like this is Addison’s vs Adrenal insufficiency. In my ME diagnostic process the immunologist thought I had physical signs of Addison’s Disease (it was pre the ME clinics so I actually saw a relevant doctor ;)). On the ACTH test I was in ‘normal range’. I later privately paid for the saliva tests and although my morning cortisol is spot on (so I can produce it ok) later cortisol and both DHEA readings were low. But in terms of NHS interpretation it’s Addison’s or not Addison’s without room for a grey area of adrenal insufficiency. Now I’m on fludrocortisone for POTS (also an Addison’s treatment) it’s hard to describe but I sort of feel like it helps me more on that side than the orthostatic intolerance side I’m meant to be taking it for. It’s not dramatic but like I have more oomph to carry out tasks I plan to do.

    So perhaps I’ll find a reason to persuade someone to let me try mestinon (fludrocortisone only took 16 years :p).
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    I know there is a standard cut-off on this test at Mayo (and I think for US labs) but am not sure about in other countries.

    I'm hoping you will get to try Mestinon... and that it will not take another 16 years!
     
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  12. kangaSue

    kangaSue Senior Member

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    I tried arguing that point with the Neurologist when they diagnosed me with Autonomic Neuropathy seeing as that can be autoimmune too but it all fell on deaf ears.
    Sort of, and I probably should have it done again. I was first tested for VGCC Ab in 2013 but had lung cancer in 2009 and had donated blood and tissue samples for a study that was being done at the time so when I learned about paraneoplastic syndromes in 2015, I was able to get some of my 2009 blood tested for VGCC ab. That result came back as zero so I gave up on pursuing an autoimmune angle.
     
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  13. kangaSue

    kangaSue Senior Member

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    Huperzine A as a supplement that is said to be an alternative to Mestinon might be an option to try. It' also one of the ingredients in Parasym Plus too.
    http://www.mghope.com/huperzine-a-mestinon-and-myasthenia-gravis/
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    My case fell on deaf ears with the Neuros as well. The Neuro who ordered the Mayo blood tests (as you know) told me with absolute smug arrogant certainty that I would be negative on all tests and he was a bit stunned when I was abnormally high on the CA+ autoantibody and GAD65. He minimized it like it was no big deal even though he was very keen for me to get the lung cat scan and LEMS testing (to check for small cell lung cancer and LEMS which can correlate w/the autoantibody) so he knew it was real even though he did not want to admit it.

    He was so entrenched in his belief that MCAS and allergic reactions were not real that he ended up attributing everything to a psychiatric cause, including an EMG which showed phrenic nerve neuropathy w/left phrenic nerve only working at 57% at that time. It was truly insane and and I saw two more Neuros who were equally useless. It was my main (ME/CFS) doctor who said to forget the Neuros and that I clearly had abnormal autoantibodies that should not be there and the best starting point was IVIG. I can literally never thank him enough and wish I could clone him.

    That's right and thank you for reminding me. Was your lung cancer small cell lung cancer (SCLC) which correlates w/the CA+ autoantibody or a different kind? I wish you could get tested for the auto-antibody again, even though it did not show up in your blood sample from 2009. If it was there in 2013, it might still be there now (unless you've done IVIG or something in theory that could alter it).
     
  15. kangaSue

    kangaSue Senior Member

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    I had non small cell lung cancer but VGCC antibody can cause any type of lung cancer, it's just that SCLC is the most common type that they find. That's something that gets very little mention in the medical literature and the reason why I wanted my 2009 blood sample tested in case a drop in antibody occured in concert with removing the tumour.

    Chances are that the cancer was just an unlucky incidental thing and I did have an episode for a couple of days of coughing up blood and what looked some blood clots about 12 months prior to getting the cancer diagnosis but testing at the time didn't find any reason for it.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Your are right and the literature links the calcium autoantibody to small cell lung cancer.

    I agree it could be incidental but I would always wonder about the connection and wish you could be tested again for the antibody. Do you still get annual lung cat scans?
     
  17. kangaSue

    kangaSue Senior Member

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    I'm down to just getting a yearly chest X-ray as a monitoring measure.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and I was just curious. I wish you could get re-tested for the CA+ autoantibody in the future.

    I did a lung cat scan in 2015 (pre knowing I had the CA+ autoantibody), then I did the second one approx one year later in 2016 (post learning about the autoantibody) which was much better quality/resolution than the first and showed lung nodules.

    Then I did the third one approx one year later in 2017 and the nodules had remained identical and super tiny (like 2 mm). They had not grown, and there were no additional nodules, and were considered an "incidental finding" that had nothing to do w/the autoantibody. My main doctor does not think I need to do one annually but we'll decide mid 2018 if it is worth the radiation since SCLC is a fast, aggressive cancer that is usually fatal if not caught early.

    He feels (as does my auto-antibody group) that the people who end up with SCLC from the CA+ autoantibody often only have this one auto-antibody vs. people like me with eleven known auto-antibodies (and most likely even more) are less likely to get SCLC vs. have all kinds of dysautonomia and random symptoms caused by an overall state of autoimmune chaos.
     

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