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I am sorry, @Wonko, my brain... What you describe sounds like something on it's own - you say it's a seizure. Do you mean a real "stroke-like" seizure, e.g. something like transient ischemic attack ? Or maybe I don't understand you completely. Do you have a "theory" to why it happens and what...

I am already more sensitive and watch for any symptoms that might indicate the occurence of an "attack". So far, I am "attack free" since one week.

Exhaustion and a seizure/stroke/migraine attack (like mentioned above) don't exclude each other. I.e. it could be a seizure caused by exhaustion. Yes! :)

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...