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Complete bullsh!t thinking?

A very clever endocrinologist tested me for this mutation straightaway, VERY early in my diagnostic path. I was seriously impressed. [Edit: wait, that was 11-B-hydroxylase, not dopamine beta hydroxylase... Huh. Maybe I should get tested for that....]

Probably not -- the other symptoms of hemiplegic migraine don't seem to match up. Thank you, though!

My thoughts exactly.

Have you talked to any major MEpedia contributors or developers on this? It might be that we would need more editorial control than is generally wiki-friendly.

BPS has been very good at presenting themselves as experts. To people who haven't done the research, may all look very proper and official, I'm sure.

"...women tend to be less adherent to some medical regimens than men (Manteuffel et al. 2013)" Riiiiight maybe doctor attitudes in the clinic could be related? :laugh: I couldn't find a reference to CBT in the study, so I wonder what treatment patients were or weren't adhering to?

Maybe out of someplace else... ;)

??? Oh, you mean some kind of processing problem? That's possible, but I definitely wouldn't see it as the only or major possibility I don't think.

I've now received two identical pieces of input from others: My knee might be subluxing a bit, depositing me on the ground. It's instinctive to let oneself drop in these circumstances. I'm one of those pwME who also has a diagnosis of EDS, so this could well be the case. Doesn't explain the...

Yeah, I was prescribed hydrocortisone. NOT GOOD. I've gone into it in depth before, so I won't bother revisiting in depth, but I was not surprised when de Vega's team hypothesized that some corticoids may have a neurotoxic effect in some pwME. That's an accurate description of my subjective...

Thanks, @BeautifulDay ! Good to know at least I'm not the only one.

Sorry, it's very frustrating, I still have Stanford logins and it keeps reverting to them... even when the article is free! I will find another link and edit the original post. [Edit: done. Now links to pubmed.]

Yes and that's why I've suspected this for myself in the past... I've always found it a lot tougher to initiate movement than to keep going once I've started, especially after prolonged rest. When minor, I kept moving because to stand still or be too still felt awful. Sometimes I wonder if...

Yes, wish more would grok this. "Random fatigue we can't explain and literally no other requirements" is Oxford, and it's the criteria used by 90% of the researchers in the UK. Wish they'd call it idiopathic chronic fatigue and not even CFS. That'd be nice.

stories like this are endlessly astounding. How does this just pop out of anyone's mouth. Both intellectually and emotionally blinkered thing to say

I hear the Defense position is open.

I have been leaning towards channelopathies as well.

Thanks for all the replies, everyone. To be clear, if I have very bad neuroinflammation, I do get tingling and numbness on my face and feet, and have a lot of the other issues mentioned here. I do say one-sided weakness because grip strength on left hand isn't so great either. Of course it's...

OK brain trust! :hug: My own thread about how pwME ignore symptoms that may be something else has shamed me. Apologizing in advance for the long description of the symptom/history, but it's complex. Using boldface to try and make it easier to read! About a year ago working at Stanford, my...