Periodic Paralysis, myotonia, channelopathy and ME

I don't know. Who was wanting to study it? But there's tons of hypotheses, and most of them don't amount to much. I save my enthusiasm for research results.

 

@Jenny TipsforME
Thanks for bringing that topic up. I was wondering about that, too. I remember there was a big article on Health Rising. But then - nothing.

I somehow get moreband more the feeling it might be about names, at last.

@Valentijn
I think the topic is still interesting, although you may be right.
(Besides, review articles aren't science in itself, too, but often only the "best scientists" on a certain area get invited to write one. That's not the case here - i.e. I suppose not invitation - still it might be interesting. As a "beginner" I was (am) always thankful to come along a (good) review article.)

 

Yes but often simply due to lack of funding for decent research to test them

The overlap of episodes of weakness, brainfog, sometimes symptoms triggered by exercise or delayed negative response to exercise makes this something that really needs discussion and proper investigation IMHO (see start of thread).

 

Ah I’ve spotted The Other Forum discussing this topic at the moment too

http://forums.phoenixrising.me/inde...opathy-na-or-ca-management.56312/#post-937085

I genuinely didn’t see that before posting here

 

Not quite sure how we deal with the dual conversation issue?

Over there they’ve got to a hint at a link with the Dauer hypothesis

http://forums.phoenixrising.me/inde...opathy-na-or-ca-management.56312/#post-937103

 

There’s a list of papers here http://me-ireland.com/scientific/channel.htm

Out of cognitive energy for now...

 

Hi @Jenny TipsforME,

Thank you for posting all this info! I would be very glad if it were possible for you to bring info here. But I can understand it's too exhaustive.

What I observe is that after ca 10min of speaking my voice gets hoarse and my throat hurts until I can only whisper. Seems the muscles weaken. Does anybody know this, too? Is there any connection to...whatever..?

 

Ppl are still definitely talking about channelopathies and autoimmunity to neuron-associated receptors like the muscarinic cholinergic, hasn't fallen off the map so far as I'm aware.

 

Possibly of related interest, Acute Flaccid Myelitis (sometimes called Acute Flaccid Paralysis) generally affects children, but can also affect adults. The cause remains unknown, but enteroviruses, adenoviruses and West Nile virus are suspects.

My viral onset (age 15) was similar to these cases, and I continue to experience episodic (some symptoms now more chronic) episodes of partial paralysis, weakness in all four limbs, facial/eyelid droop, difficulty swallowing, difficulty breathing, neck stiffness, mild tingling in extremities.

Below is some general info about Acute Flaccid Myelitis (AFM) from WebMD.

https://www.webmd.com/children/news/20161010/faq-acute-flaccid-myelitis
(emphasis mine)

 

Sorry if this is trivial: Did you check Myasthenia Gravis?

Didn't hear of AFM before, so thank you for the info!

 

Great question.

When I went to Open Medicine Institute, and mentioned paralysis, they immediately thought Myasthenia Gravis. It took over a year to get approval from my HMO for MG testing (including calcium channel), which came back negative. I did a trial of Mestinon, but it didn't help.

However, a nerve conduction test showed measurable muscle weakness. So right now I have a diagnosis of "Myasthenia" but not Myasthenia Gravis. According to my neurologist, Myasthenia Gravis has not been completely ruled out yet, however.

 

This is interesting, indeed. @Webdog.

When reading this, I realize again how badly I was checked. I hope this can be changed some time soon.

 

Actually a friend of mine has this disorder. In my five year observation of her, n=1, she is more functional than me on a daily basis, and can better handle the stress of juggling her responsibilities. But when she goes downhill, it’s quick and often is life threatening. It’s an awful disease, like ME, but I see it more of a cousin to ME. She does not exhibit any symptoms of PEM and she does not understand the concept.

But as you say, there is not enough funding to research this further. It is aggravating, because we need more expertise solving ME from slightly different angles and folks that can contribute expertise in other areas of medicine.

 

That’s good. Perhaps the terminology changed, Professor Google thought the studies dried up about a decade ago when I asked.

Probably best to go back to the original focus of this thread about potential under diagnosis/comorbidity of true Periodic Paralysis

 

I feel you are on the right track, so please don’t give up. I have issues with all three (calcium, potassium, and sodium), but not in the same way a Dx of PP was detailed in this thread.

 

It is definitely variable, not everyone with PP gets this, but some people with PP get something very PEM like with a delayed response to exercise.

I thought of doing this thread because identifying conditions which involve something which could be called PEM came up on another thread. Most of us tend to stop the diagnostic journey when ME fits our symptoms and a doctor agrees. It is useful to know about alternative explanations. I had a similar experience with POTS when I found out about it. It fitted so many of my symptoms, some of which I thought were only in ME.

I was surprised at the overlap with brainfog etc when I read up on PP and talked to people online.

Did you see @duncan 1st post on the thread about his wife?

 

I take daily parathyroid injections that for a loss of a better term, balance out all three (sodium, calcium, potassium). I once had awful OI or what ever one wants to label it as. This included varying blood pressure/ heart rate, tachycardia, dizziness, loss of balance, trouble standing up in one spot.

All I can say, with no proven ME studies to critique, is that I have been on daily PTH injections for 2 years and I have normal (BP/HR), no tachycardia, no dizziness, no loss of balance, no trouble standing in one spot.

I realize no one will have any idea here, as to what I am talking about, which is fine. I am only bringing this up because I want to encourage you to follow your instincts.

All because there is no published study, does not mean that a hypotheses is true or false. It takes a lot of money to perform a study, and not everyone with a hypothesis can afford to go this route.

When we all have the much needed funds to adequately study ME, and more hypothesis can be tested, things will be more clear, and progress will be made.

Until then we have to figure things out the best we can.

 

That's definitely true for me. One doctor told me to go on looking (but for him, ME was a waste basket diagnosis, and I don't agree on that; at least he took me serious). I am motivated to arrange further going diagnostic. My GP won't be happy I fear

 

@MErmaid, what are these parathyroid injections? Do you have parathyroid problems, too?