Temporary paralysis I need your Insights

[Jenny TipsforME]

fluid balance issues

Fluid balance issues are something I'm generally thinking about. This week my weight went down about a stone (12 pounds ish) and up again within the week. I know women can expect to fluctuate but this seems excessive. Weighing scales error is possible but it's not electronic and I used it in the same place etc.

From what I know of these things, such a fluid balance issue is also likely related to electrolyte issues, as well as possible ADH or aldosterone issues (eg https://mcb.berkeley.edu/courses/mcb135e/kidneyfluid.html ).

If my attempt with midodrine doesn't work out, which seems likely, the next step is trying fludrocortisone (for my POTS, not the specific issues on this thread). I think florinef would be interesting to see what gets better/worse.

For the time being I'm giving midodrine more of a go, as my GP suggested. I'll be surprised if this ends up working for me though. For me it makes me unusually sleepy. I'm used to feeling over tired but I don't often struggle to stay awake in the day like this (I tend to under sleep). I'm not alone on here in having this experience, though supposedly it is rare see http://forums.phoenixrising.me/inde...make-them-sedated-like-a-sleeping-pill.33264/ @zzz thinks it's a paradoxical reaction related to oxytocin. It does feel like a sleeping pill and I remember my cardiologist saying the criteria for if it is worth taking is whether I can do more on it. But at the moment the most I can do is stay awake...

 

[Jenny TipsforME]

@JaimeS when the midodrine wears off in a couple of hours I'll have a look at the article thanks.

 

[Jenny TipsforME]

authorities a given doctor will accept as competent and relevant.

Yes I think a very specific issue with this and Periodic Paralysis is that some authorities say that potassium is high/low based on a particular threshold and others that it is the relative balance between potassium and sodium which is harder to work out.

 

[anciendaze]

Yes I think a very specific issue with this and Periodic Paralysis is that some authorities say that potassium is high/low based on a particular threshold and others that it is the relative balance between potassium and sodium which is harder to work out.

I'll contribute my own belief that the vast majority of electrolyte problems are not problems with levels, but with ratios of uptake or excretion rates. There are pathological cases where an imbalance in rates leads to severe excursions in levels, but even these tend to be episodic unless they kill patients (and provide specimens for pathologists.)

In your own case I would guess that multiple autoantibodies are at work. Multiple possibilities on the list of alternative diagnoses lead back to some kind of autoimmune disease. Medical doctors have no way to judge interactions of subclinical autoimmune problems. We are looking for evidence that you trigger some diagnostic tripwire a particular doctor will accept when these attacks occur. This state of the profession is not really acceptable.

 

[Jenny TipsforME]

@adreno Im asking for a printout of test results (with a missing followup letter from the neurologist, another admin error). My sodium was right at the top of normal (if I read it right on the screen - BTW this isn't unexplained), so it will be interesting to see if potassium was relatively low.

Multiple autoantibodies sounds like hard work diagnostically

 

[adreno]

@Jenny TipsforME I think you're tagging the wrong person.

 

[Jenny TipsforME]

"Anti-nuclear antibodies were found in 56.7% (34/60) of patients with CFS, but anti-nuclear antibody titers did not correlate with the activities of the above four autoantibodies. The patients with positive autoantibodies to CHRM1 had a significantly higher mean score (1.81) of 'feeling of muscle weakness' than negative patients (1.18) among CFS patients (p<0.01)." from https://www.ncbi.nlm.nih.gov/pubmed/12851722 via @JaimeS

This is interesting for two reasons:
1) I was worried when my ANA came back OK doctors would be reluctant to investigate the immune side further
2) muscle weakness correlated to CHRM1

 

[Jenny TipsforME]

@Jenny TipsforME I think you're tagging the wrong person.

Sorry I've done that before haven't I? I meant @anciendaze

 

[Gingergrrl]

but here is a handy-dandy chart of potential culprits:

Jaime, that is a great chart! It looks like the two references to the calcium auto-antibody (what I have) both link to "weakness". From your expertise, I would assume that means "muscle weakness" vs. "fatigue" which is what my experience has been. I have never had an episode of paralysis like Jenny but I am also negative for the Potassium auto-antibodies. (I wish I could change brains with you for a day @JaimeS so I could read and understand all of this stuff better... I promise to give it back LOL).

 

[JaimeS]

I would assume that means "muscle weakness" vs. "fatigue"

Yes, that's what I'd assume too.

(I wish I could change brains with you for a day @JaimeS so I could read and understand all of this stuff better... I promise to give it back LOL).

From my experience, you just keep reading until it begins to sink in, relentlessly researching the terminology you don't understand. When necessary, behave like it's a foreign language and quite literally translate it in your own words, side-by-side with the article in question. I've been at it for two years and it's beginning to sink in.

I'm auditing some classes at Stanford in the fall, so we'll find out the degree to which I've been fooling myself!

 

[Gingergrrl]

I'm auditing some classes at Stanford in the fall, so we'll find out the degree to which I've been fooling myself!

I just looked at the page you linked and I definitely do not suffer from the "Dunning Kruger Effect" b/c I know without question that I lack the science background and you guys are all smarter than me . I am excited that you will be auditing classes at Stanford, and no doubt you will do great!

 

[Jenny TipsforME]

you just keep reading

Yes I think this is the key to self taught learning. Not being daunted about not understanding at first.

I get ncbi alerts in my inbox and read all the abstracts, sometimes the full papers, after a while you just sort of understand.

But I think a problem that a lot of us have here is we've self taught ourselves only about ME specific stuff, so there are huge gaps (sometimes basic science) that we're missing.

 

[JaimeS]

so there are huge gaps (sometimes basic science) that we're missing.

Ain't that the truth. Part of why I'm auditing stuff in the fall, and reading textbooks now. In my spare time.

 

[JaimeS]

I definitely do not suffer from the "Dunning Kruger Effect" b/c I know without question that I lack the science background and you guys are all smarter than me

That literally means -- according to the Dunning-Kruger effect -- that you are a self-aware person growing more skilled at dissecting the science.

Someone who knew less would feel super-confident that they already understood!

no doubt you will do great!

Thank you for the support!

 

[andyguitar]

Hi sorry to hear you had such a nasty spell. Hemiplegic migraine is my guess. Seen this twice when working for someone with the severe version of ME. The fact that the tests were negative for anything bad should, i hope, reassure you. Had a friend who does not have ME experience pretty much the same thing. Large amounts of money spent on scans ect much stress generated. All turned out fine. Trigger for it could be food or possibly light flickering.

 

[Jenny TipsforME]

@andyguitar my understanding of hemiplegic migraine is I'd only get one side affected and for me it's equally both sides. The only thing I get only on one side is parasthesia on the right of my face.

There also was some abnormality picked up in my muscle function on the EMG on a day just my legs were affected, which wouldn't fit migraine (though isn't a classic fit for conditions my doctors know about either), so I don't think it is that. I'm also getting what they call proximal weakness which I don't think is a migraine thing. My feeling from keeping an hour by hour diary for a week is it is to do with electrolytes, possibly with some relationship with glucose.

Next week I'm having an Occupational Therapist visit to do an assessment. The back up plan in case I don't get medical answers is to make some accessibility adjustments around the house. This is more of an issue really than for the ME side. When I was bedbound with ME I needed to be bedbound, with this I don't seem to need to rest at that level but I'm restricted from getting around my own house. It's really difficult when my partner goes to work

 

[andyguitar]

Migraine is still not very well understood by science so i suggest you keep an open mind about it. The abnormal EMG is interesting. There were abnormal EMGs picked up from patients in the Royal Free ME outbreak in the 1950s. No explaination has ever been found. My take on those abnormalities is that they came about due to the temporary closure of the sodium channel. This does not mean i think you should take extra sodium!! Just that there is a local biochemical mechanism that has gone wrong that can cause scary symptoms but is not cause for alarm and wil sort it's self out. That said if you have a co-operative GP make the most of them. Good luck.

 

[andyguitar]

Forgot to say that Midodrine can have some strange side effects so might be worth asking your Doc if you could try an alternative drug.

 

[Jenny TipsforME]

@andyguitar I gave midodrine another go and then stopped because it was just giving me side effects and no benefit.

I'm now trying fludrocortisone but so far I'm on 1/4 tablet, titrating up.

The daily episodes of not being able to walk didn't stop when I stopped midodrine.

 

[Jenny TipsforME]

My take on those abnormalities is that they came about due to the temporary closure of the sodium channel. This does not mean i think you should take extra sodium!!

My cardiologist does actually tell me to take more sodium! I noticed from the blood tests on a day with bad legs that my sodium was right at the top of normal range (day of neuro exam but not same day as the EMG). I didn't pay particular attention to this, as I'd taken a sodium tablet, I more saw it as positive that I was retaining salt that day (though I noted that the sodium hadn't enabled me to walk). If the sodium channel gate is closing inappropriately, would that keep the sodium in the blood high as it's not getting to the muscle?

My movement issues don't vary in line with my ME symptoms so I'm not expecting the answer to be part of mainstream ME (though it's probably not entirely unrelated either).

What's your background with this type of area?