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Temporary paralysis I need your Insights

Discussion in 'Neurological/Neuro-sensory' started by Jenny TipsforME, May 25, 2016.

  1. duncan

    duncan Senior Member

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    @Jenny TipsforME , you may wish to reach out to the Periodic Paralysis Association, or Periodic Paralysis International. My wife belongs to one or the other, or both. (I cannot remember which - but I DO remember they are both brilliantly helpful for people who may suffer with PP.)
     
  2. andyguitar

    andyguitar Senior Member

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    Could be mould in the shower head.
     
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  3. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @andyguitar yes I’ve heard of similar issues from mould.
     
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  4. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Just had very interesting reply from someone in a Periodic Paralysis group who had a CFS and POTS diagnosis and has massively improved once she heard about PP issues, increased potassium, reduced salt and carbs.

    It’s definitely worth people on here being aware that symptoms like brainfog overlap with PP.
     
  5. kattsqueen

    kattsqueen

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    Hi Jenny any better luck finding your answers. Today is the first day that I have seen this thread. I am diagnosed, with andersen Tawil syndrome and I am symptomatic with the normal range of serum potassium. My range of symptoms include hyperandernergic issues.. high blood pressure, episodes of extreme muscle weakness triggered by carbohydrate or high sodium intake. Sleep disruption, chronic pain, obesity, chronic fatigue not a diagnosis of cfs Me in particular. From what I have read your symptoms sound so very much like the symptoms I get. I am symptomatic even while my serum levels for potassium is in the normal for the average guy range of high threes to low mid fives. It took me several years of adjusting medications, tweeking diet etc etc to discover my best normal is 5.6 mmol. I also have lax joints which are typical with Andersen Tawil syndrome as well as facial features and minor defects of toes fingers etc that also are known to happen with ATS. My miracle is low carb diet, high potassium foods, high protein and fats. I also supplement quite a large amount of potassium along with medications to avoid it dropping lower. I also have interactions with anesthesia and sensory overload. Lidocaine or novocaine doesn't work well for me, I tend to wake up during surgery. I just received my data from Genes for good and I have numerous sodium and calcium channel mutations. I do not have the first mutation discovered to cause ats in the kcnj2 gene. I do have other potassium channel mutations and a plethora of collagen mutations and more. It really isn't surprising to me as my family tree is kind of bottlenecked.
     
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  6. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Sorry @kattsqueen I didn’t get an alert.

    I’m mostly on the Other Forum these days but since this is such a long thread and people here were so helpful I thought I should give the latest update.

    I’m getting over a bad crash so can’t write (or read) much right now but it seems like I’ve got to a genetic explanation for Atypical Periodic Paralysis. I’ve had feedback from a relevant genetics expert who thinks the mutation I have is a good candidate for my symptoms (but I haven’t yet had a follow up appointment to see what a medical doctor thinks of it).

    It’s on MT-ATP6 so it is actually a mitochondrial defect (OXPHOS problem) rather than the more expected ion channel mutations. But ATP also regulates the ion channels so if you have problems with low ATP a possible downstream effect is temporary weakness which presents as Periodic Paralysis. Obviously it is also a good (partial?) explanation for ME symptoms too.

    I really feel like this issue could be relevant to other people with ME who get these paralysis episodes (eg @taniaaust1 I wanted you to be aware of this because we have quite similar expressions of symptoms). It hasn’t been well studied and would seem to be rare, but this issue has been found with MT-ATP6 and MT-ATP8 variants.

    If I understand this correctly, I’ve been approaching this from the wrong angle by trying to add electrolytes to correct an imbalance. It would appear that a better approach is diuretics to lose some water and electrolytes. Families with these mutations responded really well to acetazolamide (which is also treatment for more conventional Periodic Paralysis).

    I can add more info when I’m doing a bit better cognitively (references etc)

    Thanks to everyone for your input especially @duncan @anciendaze . I wouldn’t have got this far without it.
     
    Last edited: May 18, 2018

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