Temporary paralysis I need your Insights

[Jenny TipsforME]

I probably shouldn't be writing this I suspect aggressive rest required so keeping it brief for now

Help:

Yesterday had 11 hours not able to move. Could control head, fingers, toes
Reversed again instantly except I still feel weird, tingling sensation etc
Felt too ill to sleep last night, drifted off just now woken by throat constriction
Got similar throat constriction in hospital when lifted to sitting position
If they moved me I could stay in position, except for standing, but I couldn't decide to move
Housebound but this was rapid deterioration
After sitting shower but I'd been able to dress ok
I have ME/CFS POTS and fibromyalgia diagnosis, occasionally migraines
Discharged from hospital still unable to move arms and legs by myself as put down to ME and they had no idea how to help
Partner could see vein pulsing in my neck
Neither high or low heart rate except when paramedics lifted me to stand then tachycardia and legs giving way like they do for me in a POTS flare. All medics adamant the paralysis didn't fit POTS
My potassium and other electrolytes were good
My blood results generally lied and said I was very healthy

The whole experience made me frightened and angry at lack of healthcare.

I've had ME 18 years and nothing like this. What do you think? What's your differential diagnosis?!

 

[Never Give Up]

Sucks, doesn't it!?! Terrifying. It's completely outside their realm of their expertise. I asked Dr. Chia about this last week. He said he has lots of patients with transient paralysis and other neuro symptoms. His explanation is that enteroviruses in the brain become more active leading to symptoms, then less active reducing symptoms. He says we know very little about why they become active and why they become less active.

Is he correct? No way to know. All I do know is that his treatment is helping my son and nothing else has.

Still trying to decide whether to get a neuro consult or not...

ETA: try searching PR for "paralysis", I did it years ago, turned up some interesting bits.

 

[Jenny TipsforME]

Thanks yes done that search periodic paralysis and Gibson Barre (sp?) sound worth more go ogling.
BTW I have dna results if anyone has ideas for implicated SNPs
Thinking of pushing for neuro appointment. Done cardiology. Done Immunology. Haven't done neurology yet.

 

[Valentijn]

The closest to that which I've had was a 3 week hemiplegic migraine. Though I could move limbs, I couldn't feel things very well. A neurologist prescribed a normal dose folic acid after homocysteine was my only abnormal result, and it cleared up 30 minutes later.

 

[duncan]

I have a family member with ATS, which is a form of periodic paralysis, specifically a potassium channelopathy. This typically is handled by neurologist, but we went in through the cardiac side of things, i.e., a cardiologist ordered the genetic testing. (incidentally, my understanding is potassium levels will usually be normal except during a paralysis episode, at least for ATS)

Point is, you may wish to consider getting tested for genetic defects or other mechanisms that cause periodic paralysis, if only to rule it out, but also as treatment might be dependent on knowing which if any form you have. My guess is that a neurologist should help you be able to rule PP out, or order the right tests to do so.

BTW, my family member who has this is currently doing much better than I.

 

[Hell...Hath...No...Fury..]

@Jenny TipsforME sorry to hear this is frightening you somewhat, this symptom has always been a norm for me when i'm in a crash. I spent two years like this at the start during most of the time but ever since, its only when ive had a crash and exceeded my limits.

It usually lasts no longer than around 6 hours when it happens these days but i dont crash as much now as i do very little activity.

I'm exactly the same as you, fingers, toes and head fine. Social services gave me an environmental control system that is activated by a button on my pillow so that even during times when i can only move my head (i live alone) i'm able to switch on lamps, lights, tv, open my flat door, open the building's communal entrance two floors down, just by moving my head and pressing the button on the pillow.

Even when i can move around i still use this button whenever i'm in bed to save energy.

I used to find it scary 20 years ago but its just normal to me now. It helps knowing that its never permanant and as soon as enough rest is had the limbs wake up again.

 

[Jenny TipsforME]

Thanks everyone.
@Hell...Hath...No...Fury.. Sounds same as you then. Was hoping not ME as then drs might do something about it. What tests did you have to rule out other causes?
It ended abruptly and at the point I was lying down in dark by myself, so maybe required removal of sensory overload? . At least I know now it can go. Yesterday I had no idea of timescale or what was happening.

Do you get the throat constriction thing too? It went as soon as they lay me back down. I've had it before but only waking me up from sleep.

Other possibly irrelevant point about it ending was I had some licorice tea and supplements as to me it felt more potsies than ME (although POTS heaviness usually goes as soon as you lie down). Licorice can boost blood volume. It can also lower potassium.

 

[Hell...Hath...No...Fury..]

@Jenny TipsforME definitely removing sensory overload is key to ending it i think, thats what I do too.

Back in the early days I can't remember all of the tests i had, and most were probably rubbish to be honest. Since the early days i havent bothered looking into having the paralysis tested for anything else as its always just been part of my ME crash, fixed with rest so not something ive looked into as a separate thing, and because i dont crash as much anymore because of pacing its become more of a background symptom nowadays.

I'd never spoken to many people in the flesh who had suffered with temporary parslysis but i always put that down to the fact that i was so much more severe than most ME people i met in the early days.

It took 10 years before i got to speak to people who understood my early severity when I eventually got online where more severe bedridden people can be accessed who you wouldnt normally be able to meet in real life.

For me the POTS is definitely a different entity, as lying down fixes the heavy limbs, whereas with the temp paralysis its more of a complete overload and a short circuiting of the brain and/or shut down of the brain.

I don't get the throat constriction, the only time ive had that also woke me up but i put that down to sleep apnoea. It only happens once or twice a year for me.

 

[alicec]

Gibson Barre (sp?)

Guillain-Barre - (can't do the acute over the last e with this software). A French word so pronounced gi (not ji) - an - bar-eh.

You can google it, lots of info. Should have been something your doctors considered, maybe they had good reason to rule it out.

 

[anciendaze]

Just a suggestion, based on a person I know with periodic paralysis, this may be triggered by metabolic stress as well as by problems with dehydration, electrolytes or neuromuscular junctions. Keep track of what you eat and see if the symptoms appear at a fixed time after eating or exertion. Big carbohydrate loads are a problem for that patient.

A common problem is transient extracellular hypokalemia when potassium is taken up by cells doing work, including metabolic work. Most people don't experience any such paralysis, but there are definitely exceptions.

It might also be a good idea to be tested for antibodies which could cause type 1 diabetes, like those for GAD65. Even if you don't have true diabetes, you can have increased insulin sensitivity as your body attempts to compensate for damage. This can make life much more difficult. It might even be time to check your entire endocrine system again.

 

[Jenny TipsforME]

Strongest symptom after bit of sleep is now neck pain
Oddly I'd been having earache on and off felt like glue ear rather than ear infection. No sensation of earache or glue ear during paralysis but came straight back when paralysis went with some neck ache
I had v slightly raised temperature in hospital, guess they checked immune stuff. Felt I was questioning judgement too much to ask to list everything that was so normal and healthy!
Patchy sleep tonight woken again by throat constriction
Then woke partner trying to sleep talk which I never do. Probably stress of it

Trying more sleep
.

 

[Jenny TipsforME]

Electrolyte inc potassium normal during paralysis. Does that rule out some of the suggestions?

Had taken folic acid in B50 supplement so @Valentijn fix wouldn't be it

Also had bisoprolol, ivabradine, acetyl l-carnitine, selenium, elyte electrolyte,

First time I took new vitamin d3 500 though

 

[Jenny TipsforME]

Just had nice GP visit and he wanted to know what you thought on here (ie accepted you might know more). Much more in touch with reality than ER staff.

No simple conclusion. Quite possibly viral, interested in enteroviral theory.
Rest. Painkillers. Sleeping tablet. Try to keep neck moving (now gone very stiff).
If happens again neuro referral.

 

[Hell...Hath...No...Fury..]

Its great that you had such a nice GP! What a rare gem. Hope you start improving a little soon. Have you been lying in the same position? As i get a very sore neck during these times. When moving it for the first time its almost impossible but the stiffness and pain fades after a few hours.

In your case though combined with ear problems its probably not the same thing.

Keep us posted on how you get on and keep hold of that GP if at all possible

 

[Seven7]

I was just paralyzed yesterday, I tried to talk and ask for help but couldn't for about 3h. I had a pulsating in the head. I think mine was inflammation in the brain.

I know low potassium can do that so I will take more oral IV today just in case but since I have had not cramps I think is inflammation (I ate mushrooms which I am allergic) but I ate other foods lately and was ok to reintroduce. I will keep away from muchrooms for now I guess.

 

[anciendaze]

I have to admit that stiff neck is a concern. This goes along with meningitis or encephalitis. Even a modest elevated temperature points more toward infection than an autoimmune response. Could be some of each, since autoimmune problems are more likely to lower temp. This kind of complication makes typical medical thinking about diagnostic thresholds invalid.

Quite frankly, I doubt that ordinary immune tests run from samples taken in ER mean much. There are a lot of possible autoantibodies affecting nerves, and you need some pretty spectacular evidence of neurological problems before doctors will run specific tests for, say, NMDA receptor autoimmune encephalitis. You can read about what it took for even excellent hospitals to recognize that problem in "Brain On Fire" or "The Girl On The Sixth Floor". Such cases are extremely rare, but we still don't know how much of the apparent rarity is due to low incidence and how much due to failure to recognize the problem. Prior to about 2007 no cases had ever been identified.

That is only a single very long shot. There have to be others we still don't recognize.

 

[Jenny TipsforME]

@anciendaze a different gp has previously commented that I'm prone to a meningeal reaction to viruses but if I can talk not meningitis (as advice about when to treat as emergency).

Something I've been thinking is if Tuesday was ME flare it would be Very Severe ME. Not experienced that before but have fair amount of experience with common Severe ME. In my last relapse e I wouldn't be able to write this. The text would move. I wouldn't think clearly. I'd also have a lot of trouble talking. Those things haven't happened this week. Surely you don't get Very Severe without also being Severe?!

My working theory at the moment is it is a current virus which effected a brain region. Primary motor cortex? I did some neuro at uni but don't remember much.

Or seeing as @Hell...Hath...No...Fury.. and I both have the ME and POTS combo could it be something to do with interaction of both. I'm definitely also having POTS flare. Eg brushed teeth and 126bpm despite beta blocker and ivabradine to lower heartrending. Both conditions get worse with virus and ME doesn't like high bpm

 

[Jenny TipsforME]

@lnester7 really scary isn't it? Hope neither of us get it again.

 

[Seven7]

@lnester7 really scary isn't it? Hope neither of us get it again.

It is scary is the one that freaks me out the most, I feel lost in my own brain and it just sometimes hope that I don't get there permanently. Some days lasts a few hours but some days I get like that in and out up to 16h. I never know when I will get out of it. I stablished a checkup method w family, where they make sure to check every 2h no matter what. But has not been very successful since I am so unresponsive so even if I need to go to the restroom, I can t tell or ask anything. I will try to comeup w something else.

 

[anciendaze]

@Jenny TipsforME

The POTS problem is primarily evidence of autonomic damage, and this depends on structures from the brainstem on down the spinal cord, and ganglia outside the CNS. Autonomic functions can continue in laboratory animals which don't even have a cortex, so I really don't understand people who insist these things are under quasi-conscious control.

The problem with moving text sounds like an effect on the nerves in the substantia nigra (Latin for "black stuff") which is where motion compensation for movement of the eyeballs takes place. Again, this is way down toward the base of the brain, but above the brainstem.

Acute meningitis produces swelling in the tissues all around the brain which control supplies of oxygenated blood to the brain. There is also increased intracranial pressure which may compress structures up against bone, and those things at the bottom of the brain are tightly constrained. This can have all kinds of effects just about anywhere in the brain, but your problem doesn't sound like acute infection.

This sounds like chronic inflammatory disease or an autoimmune response, and current technology is just not very good at detecting such problems unless someone guesses exactly what to test for. There is likely to be immune impairment allowing this to progress, but again we don't have good ways of measuring how well an immune system is working or exactly what it is doing unless it fails, thus telling us it is not working.