Periodic Paralysis, myotonia, channelopathy and ME

[Valentijn]

I don’t know who wrote it? I’m interested more in the general hypothesis rather than a specific paper. It seemed like it was discussed quite a bit at one point then hasn’t been for a few years. Was this because evidence was found to refute the idea of channelopathy in ME, or was it simply lack of funding?

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.

 

[Inara]

@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.)

 

[Jenny TipsforME]

But there's tons of hypotheses, and most of them don't amount to much

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).

 

[Jenny TipsforME]

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

What can we learn from management of Hypokaliemic Periodic Paralysis?
This may be useful to ME patients with low/borderline plasma potassium levels and muscles weakness

Here an interesting link with some extracts :

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

I genuinely didn’t see that before posting here

 

[Jenny TipsforME]

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

I don't think that hibernating mammals are a real model for ME patients, but there is some similarities. Here what I found about calcium channels in hibernating mammals:

"Compared with cells from non-hibernators, hibernator cells are characterized by downregulation of the activity of Ca channels in the cell membrane, which helps to prevent excessive Ca 2+ entry."

(this prevent hypothermic Ca overload in cells)

It may be that ME patients have down-regulated Ca channels from their hypometabolic state...

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

 

[Jenny TipsforME]

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

Out of cognitive energy for now...

 

[Inara]

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..?

 

[JaimeS]

@Valentijn it describes itself as a paper I don’t know who wrote it? I’m interested more in the general hypothesis rather than a specific paper. It seemed like it was discussed quite a bit at one point then hasn’t been for a few years. Was this because evidence was found to refute the idea of channelopathy in ME, or was it simply lack of funding?

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.

 

[Webdog]

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)

Oct. 10, 2016 -- A rare but serious illness that causes paralysis in children appears to be on the rise this year, the CDC has warned.

Acute flaccid myelitis, or AFM, has affected 50 people so far this year, most of them children. It’s characterized by sudden muscle weakness, often following a respiratory illness or fever. In some cases, the paralysis has been permanent. The illness is mystifying scientists and scaring parents.

"The key symptom is sudden onset of weakness in the arms and legs," says Patel. There is no pattern, she says, as the weakness can affect several limbs or a single one.

"In some situations, you can have facial drooping or difficulty swallowing or speaking," she says.

There can also be neck stiffness, says Amesh Adalja, MD, a spokesman for the Infectious Diseases Society of America and an infectious disease expert at the University of Pittsburgh Medical Center.

Numbness or tingling is rare, the CDC says, although some have pain in their arms and legs. Some people with AFM are unable to pass urine.

Several different types of viruses are believed to trigger AFM, including enteroviruses, adenoviruses and West Nile virus. But scientists don’t know what’s causing these specific cases, Patel says. It’s unclear why some children get AFM after an infection while others don’t.

However, AFM remains extremely rare -- less than one in a million, Patel notes.

And it’s only one of a number of conditions that trigger limb weakness, the CDC says.

 

[Inara]

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.

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

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

 

[Webdog]

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.

 

[Inara]

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.

 

[MErmaid]

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 which can include brainfog, phases of weakness and delayed reaction to exercise. They seem to have something like PEM though there are variations in how it expresses.

If you read this account, she could easily have been misdiagnosed with ME:

http://fightinghkpp.blogspot.co.uk/2012/05/the-battle-against-periodic-paralysis.html

I’ve definitely had very similar experiences, as well as more full on paralysis. Although my stamina is very limited, what most intrigues medics is my changing strength. I can have an abnormal neuro exam and EMG showing proximal weakness, then another day I can have a normal neuro exam. I can walk up and down stairs like a healthy, then an hour later not be able to walk a step.

.

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.

 

[Jenny TipsforME]

Ppl are still definitely talking about channelopathies

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

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 than genuinely so rare. Or it might not be so rare for us. In the same way that POTS goes from unlikely to 1/3 probable if you have ME, there might be some reason for comorbidity. Anecdotally people with PP have told me they’ve noticed comorbidity of POTS.

In terms of illustrating what I’m wondering:

Is there a small comorbidity like this?

Or do lots of us have a comorbidity that goes undiagnosed?

Or is PP properly separate but ME and POTS are more common so a likely misdiagnosis?

 

[MErmaid]

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.

 

[Jenny TipsforME]

She does not exhibit any symptoms of PEM and she does not understand the concept.

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?

 

[Jenny TipsforME]

my wife has PP, and I also see striking similarities between many of her symptoms and those of other PP patients with symptoms of pwME.

...

Yes, PP comes with payback for doing certain things, and also for consuming the wrong things.

 

[MErmaid]

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.

 

[Inara]

Most of us tend to stop the diagnostic journey when ME fits our symptoms and a doctor agrees.

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

 

[Inara]

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