Something we can all relate to

[Ladyuponthelake]

If have a chance watch 'Brain on Fire'

I'm sure we cn all relate to how the parents feel. It's about a Brain Autoimmune Disease

[AnnNY]

Yes. I saw this the other night. I learned about the book when an interview with her was on the radio, directly after I left the same ward of the same hospital after having a seizure in the ER . Unfortunately, I wasn't lucky??? enough to be diagnosed there, and was treated really badly. (As if I had a psychsomatic episode, despite high inflammatory markers, lactic acidosis, and the seizure being seen in the ER by a doctor, and on the EEG, and getting better on heperin.) Still really angry about the whole thing. Although have much better help, since. My last rheumatologist asked me if I had read the book. They did the test for her antibody in the neurology ward, I expect knowing their previous misdiagnosis of the author and the her forthcoming book, and I didn't have it.

Since my family still doesn't understand, I've been thinking of giving them the movie as "home work." I wasn't having psych like issues in the three weeks before I went to the ER, just lots of neuro issues, so I am afraid it might confuse things for my siblings.

[Ladyuponthelake in reply to AnnNY]

Oh my goodness I am so very sorry you've suffered this. Shame on them! You must feel so let down by people you put trust in, for your life...

I cried through the entire movie. This hit me very hard even though I don't have brain inflammation. I have so many other issues that have all been put down to menopause. Funnily I went through menopause over ten years ago when I had chemotherapy & radiotherapy.

I'm so pleased that someone took time out of their life to care as well as do their job. Now the information is out there.

I hope you are getting the attention and treatment you require.

Look at the entire person doctors, after all you trained for this.

[AnnNY in reply to Ladyuponthelake]

Thanks very much.

The flare that brought on the seizure came after being in the sun for two days. I'm still not absolutely sure it was a lupus flare that brought on an Hughes syndrome flare, or just Hughes. I think any one who has these brain issues might find it interesting.

[Ladyuponthelake in reply to AnnNY]

How are you now AnnNy?

I found it interesting on how everyone assumed she was drinking. They didn't look at the person as a whole. I think if she wasn't having seizures she might not have been reinvestigated. So many symptoms are put down to life style assumptions or age and not totally investigated. 🌻

[AnnNY]

The movie just came out on Netflix.

[Ladyuponthelake in reply to AnnNY]

Yea that's where I found it too