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I’m not the first to think of this apparently

Crossed over!

@Marco actually no it isn’t necessarily lifelong, though it’s unusual to get past your mid twenties without at least an episode of weakness (some people with the mutations never get full on paralysis, but they know because of family testing). Interestingly advice is to not disregard weakness...

Yes I agree it would need to be that way around. An interesting thing would be if a PP expert could sort PP patients from pwme correctly (with and without looking at mutations).

Yes I’ve been feeling unusually low since the news, in a way that is out of character for me. Partly it was the unexpected timing. I didn’t have a chance to talk myself through possible disappointment, I just suddenly saw the update :( I blogged about my current emotions and dealing with...

That’s the reason I started this thread @duncan my hunch is there’s something to be found here and no one is looking in the right place. My PR thread was looking for personal answers, but with this thread I’d like to explore the general idea of a connection between periodic Paralysis, ME and...

There are autoimmune channelopathies. eg myotonia (a similar thing I’m looking into) can either be genetic or acquired on an autoimmune basis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151600/

Yes I remember. You were the one who introduced this to me. That booklet is through Periodic Paralysis International. Another line of speculation I have is do we have a similar mechanism going on without the genetic mutations? Eg could damage after a virus cause ion channelopathy?

BTW this shouldn’t be under MS, I thought I was putting the thread under Neurological.

If you’re curious to find out more here’s a booklet about diagnosis: https://docs.google.com/open?id=0B-savOlQA6QCZjRjODdlMWYtM2M4NC00ODFlLWE4MDMtMGIyOWFmZjJiMmNi A common misperception that doctors have is potassium levels are abnormally high or low (for the general population) during...

Periodic Paralysis is a very rare condition and it is properly ‘genetic’, involving specific mutations rather than a collection of genetic tendencies. It is to do with potassium/sodium/calcium channel problems. I do wonder though if it is one of those conditions that is rarely diagnosed rather...

My experiences, which I’ve discussed at length on The Other Forum, have led me to read up a bit about Periodic Paralysis. Reading more I feel like it might well have some biological connection to ME and/or POTS. The name is slightly misleading, it does involve symptoms other than paralysis...

So is this still a likelihood? Is there some sort of subset, just much smaller than expected? Or will the UCL work now be focused on more general understanding instead? I’m finding it hard to accept the previous studies and anecdotal reports were simply placebo effect or fluke. I don’t think we...

In Defence of Dogs is an excellent book. Re this topic I haven’t read the full thread. I’m not sure what I think about the actual biology of whether our behaviour demonstrating ME comes more from the brain’s interpretation of the best course of (in)action given xyz bio problems, or if the bio...

@Skycloud yes

As a bit of an aside, Mendus is worth looking at in terms of attempting to track ups and downs. It is a Citizen Science/quantified self hobby project run by a neuroscientist who has CFS. You get personal results so no need to worry about whether you do have the same exact problem as other...

Should there be a new thread with people just posting conditions which are worse with exertion, or have a delayed fatigue? I’m thinking quite brief and to the point, with spin off threads if people are interested in discussing particular conditions. Did I mention Periodic Paralysis in this...

So would we be looking for what is considered a side effect for cancer patients? It is also something that suppresses B cells, which was my assumption about why they picked it. This possibly is bad news. Though there was something reassuring about cyclo looking more promising in with the :(...

I sort of see it the other way around. I think people who don’t have hope in recovery/remission and just keep going are stronger. I’m naturally inclined towards hope, and crumble without it. Personal experience is important too. I know I have got to almost-well before and I’ve known several...

But the ME fatigue doesn’t simply go by controlling the tachycardia, in my experience. POTS fatigue does but that is more immediate and feels different (though this could be what they’re picking up). I agree that there’s something going on re heart rate and ME. It is helpful to reduce tachycardia.