Hi, TreeLover.

The metallic taste reminds me of hemochromatosis. Have you been tested for high iron levels?

Extreme thirst can be a sign of either diabetes mellitus or diabetes insipidus.

It might be a good idea for you to see an endocrinologist for a general evaluation. Night sweats could be caused by a number of hormonal issues.

Have you had basic testing done, such as thyroid, B12, metabolic panel, CBC, etc.?

You might have more than one thing going on. Some of it sounds like a drug reaction. People with hemochromatosis can have liver issues and not be able to metabolize drugs, making them sicker than other people when they take them.

Please get to your internist to talk to them about that soon!

Annie

Thank you Annie,

I have had all those panels done, but nothing showed anything out of whack enough to diagnose anything.. just the slightly elevated bilirubin for a while there, which does indicate some level of struggle for the liver. I did have an energy medicine practitioner (NAET) diagnose hemochromotosis, but the GP couldn't find it. Frustrating.. But on the bright side, I'm doing much better now.. not taking any meds, only homeopathics, and doing Kundalini yoga to stay well. I do my best to live as cleanly as possible, avoid food chemicals, wheat/gluten, and eat mostly organic. This all seems to be working well for me so I will stick with that, and meanwhile see if I can get tested for that other antibody.. has anyone else had that test done?

Treena

I wonder if you have heard of something called "periodic paralysis". It came to my mind when you mentioned having difficulty with anaesthetics. Since PP is a channelopathy, anasthetics (especially depolarizing ones) can cause a severe reaction.

It's on my own short list of things I'm being tested on. The basic ways to get tested on it are genetic (only the 6 most common genes are tested, usually), and more dangerous ways (like having an IV of sodium, potassium or glucose (depending on which type you have) and seeing if that triggers an attack)

The big difference between it and MG is that MG is clearly linked with weakness WITH exertion, while PP is linked to weakness AFTER exertion. This sort of confuses me, though, because (like MG) the disease can take a lot of different forms and I've seen some references to "after" being anywhere from seconds to hours. How can you tell the difference between weakness with exertion and weakness after if "after" can be a second or two of relative rest?

One thing that a PP attack can do is be "abortive", which is where the attack doesn't really end and can stay with you for months of fluctuating weakness. This sounds like what you had with the anaesthetics.

That's great.. glad you're okay! Seems some of us are sensitive to these and some are not.. would be great to know why and how! Some day, perhaps...

Again, I don't have a diagnosis myself, but I had several months of severe disability following a TDAP vaccine (though I have no idea if they are related, since my health was slowly declining up to that point anyways). Not sure how that compares to other vaccines. At first I thought it was unrelated, but when my doctors began pursuing an auto-immune theory it sounds like it might wake up you immune system (at least in some people).