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This is an aspect I didn't think about although I know of it. I could imagine it's some sort of "nerve/brain exhaustion", a little bit like @Wonko explains. But, @Wonko, if I understand you correctly, you have real seizures/strokes, which are on their own, parallel to PEM symptoms?

Dear @Subtropical Island, thanks for clarifying! I will definitely talk with my doctor about it next time - I already mentioned it briefly, and he seemed to be surprised - and I will report what the outcome was. I wish very much it's just harmless. Definitely! Each one's post was very...

Thank you, @Seven! I haven't watched Unrest so far. It gives me some 'comfort' that others, like @Wonko or @Invisible Woman (and Jessica and Jen in Unrest) experience the same. The problem is - I don't have the feeling that exhaustion symptoms come up before; well, not those I'm used to and...

By the way, I tried O2 during the last 'seizure', and I'd say it didn't do anything.

Thank you, @healthforall! You raise interesting points. I will have to think about it. Actually, I would say, my sleep feels close to normal since I take immunoglobulins plus melatonin. This changes during PEM/crash. Of course, I can't say anything about quality. I don't feel grand in the...

I watched that video, and it made me so unbelievably angry. These people (psychiatrists, social workers, doctors, the law, e.g. judges, police...) behave abominably; they must be without feelings not to feel ashamed of themselves; I don't care if the law today says they acted legally, in my eyes...

@Andy, if you want any translations, please let me know. Thank you for summarizing everything!

My spontaneous thought was a little similar to @Arnie Pye's about the thermometer. It took some experience to understand how measuring in the mouth works. It's not simple, I need a certain position which hurts, and I repeat measurements several times and take the highest, plus 0.5° (it's cooler...

Thank you, @alicec!

Reasonable. If you would be willing to report, I'm interested. Best wishes for your appointment!

Ah, thanks for the correction! How can you measure low enzyme activity?

Hi @andypants, how did your appointment go?

Whew! :emoji_cold_sweat:

Oh :confused: I didn't think about that at all. I received the kit today - so no problem in that direction. Do you think there will be a problem in the other direction, i.e. to the US?

Today it came, cool :)

What does it mean, "under the NHS"? I don't know how it is with you, exactly, @Wonko. I have a disability status. That doesn't mean I haven't got legal competence. Officially, the UN convention for human rights still holds in Europe, and in European countries - officially - disabled or sick...

Interesting, @alicec, thank you! Concerning low levels of enolase, I found spontaneously this: https://en.m.wikipedia.org/wiki/Enolase_deficiency Sounds familiar... In case of hemolysis, according to Mayo, the NSE value can be (falsely) elevated. Which could mean that one wouldn't see low...

You don't need your GP for that. I don't want to justify my advance directive. It's thought through, that will suffice. I have three doctors' certificates that validate my legal competence at the time of writing the advance directive.

Thank you, @alicec. I think I understand. I reminded myself of alkaline phosphatase which rises, too, if certain tissues are damaged. So I guess that there's also the possibility of low NSE. What would that mean? If no rapid neuronal destruction can be observed, would that mean that elevated...

Thank you @Rosie. I wonder if this long shipping time will influence the test.