VENTING. Very long and detailed post.

[stevemills]

Hi pennstater. You are right in that many brain areas overlap, especially functions of the brainstem with the cerebellum. It is surely not a clean process. As you know I'm not a medical professional, so all of this research I'm doing is for my own benefit and could end up being incorrect.


To answer you question - it's not a straightforward process and does not involve a single source. I spent many hours trying to understand how the brain, nerves, and blood vessels work. I'll give you some examples of my most common sources, but there's a lot more than this.


Blood supply of the brain and spinal cord: https://www.ncbi.nlm.nih.gov/books/NBK11042/
From there I cross-referenced information with Wikipedia, diving into each sub-page: https://en.wikipedia.org/wiki/Cerebral_circulation


This page is a massive rabbit hole. I traversed down at least a hundred pages learning about the various nerves involved and how they interact with the brain as a whole. I used these to cross-reference against symptoms and medical journals in my other sources. This is where my process of "mapping" began.
Wikipedia: https://en.wikipedia.org/wiki/Cranial_nerves


This video was tremendously helpful!
Head and Neck Anatomy for Neurosurgeons (WARNING NOT FOR THE SQUEAMISH): https://www.youtube.com/watch?v=fWYk4iBA1Z8


I'm a big fan of PubMed medical journals. Here is an example PubMed article talking about Oscillopsia induced by hyperventilation. This is one example where I can compare to my symptoms and decide if it's similar based on the duration and trigger of attacks they talk about (mine is chronic and constant): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4857855/

[pennstater]

Ok thanks. I have read some things before, tried to tie it to my symptoms, only to have neuros and neuropsychs tell me no, more complex than what I was reading.

Based on your earlier post, I thought maybe I missed some updates based on functional MRI mappings.

Thanks again.

[stevemills]

Latest update. It's been a wild ride! I got a whole new list of blood tests and lumbar puncture test results. The lumbar puncture went well, but the spinal fluid leak afterwards was terrible! I ended up needing a blood patch because the headaches and leak were so bad. My tonsillectomy was a walk in the park compared to the spinal headache.

Let's get the first thing out of the way: NO O-BANDS. The only abnormal result was CSF total protein came back at 50. According to this website, that is suggestive of MS: https://emedicine.medscape.com/article/2172226-overview

However with zero O-Bands showing, that makes it what - 5% likelihood this is MS?! Basically slim-to-none chance, especially with lack of MRI evidence.

Blood tests were for lyme, vasculitis, c reative protein, and another set of ANA for lupus and sjogrens. All negative.

Tomorrow I get a Visual Evoked Potential. I assume that will be normal too if there's nothing on MRI/LP. Which leaves me in a very very bad position as things are still deteriorating.

My latest symptoms:
- Swallowing muscles paralyzed completely leading to violent choking episodes. I chew, the food hits the back of my throat and that's that - I can't swallow the food at all! I struggle to get the food back out of my throat (and breathe). This has happened twice now, almost a third time

- MS-Hug type band pain around my lower hips. Oh dear god this is by far the most painful experience of my life, 10X worse than the spinal headache!! I couldn't sleep and it kept me immobilized and crying out in pain. It's like a sledge-hammer was taken to my ribs and then a tight band crunching them down to finish the job. I couldn't breathe or move.

Maybe I am one of those rare people like wheelchair kamikaze? Who knows. I have zero energy left to investigate this thing, so i'm just going to keep doing my best to get by until I become severely disabled or die.

[Seasha]

Steve - have you ever been checked for Guillain-Barre syndrome? Just wondering since you mentioned swallowing problems in addition to your other problems. Protein levels are also elevated with this condition.

https://www.mayoclinic.org/diseases-...s/syc-20362793

[stevemills]

Steve - have you ever been checked for Guillain-Barre syndrome? Just wondering since you mentioned swallowing problems in addition to your other problems. Protein levels are also elevated with this condition.

https://www.mayoclinic.org/diseases-...s/syc-20362793

Hi Seasha. Thanks for the input. I was told GBS is ruled out because it doesn't have a relapse-remitting course (I had a flare in 2014/15, remission in 2016/17, and now another 2018 flare up) and is usually more severe with muscle weakness.

I thought maybe myasthenia gravis, but I don't have the signature droopy-eyelids (though I occasionally get left sided face droop) and my neuro doesn't seem to think that's it either.

[Poppy7402]

Hi Seasha. Thanks for the input. I was told GBS is ruled out because it doesn't have a relapse-remitting course (I had a flare in 2014/15, remission in 2016/17, and now another 2018 flare up) and is usually more severe with muscle weakness.

I thought maybe myasthenia gravis, but I don't have the signature droopy-eyelids (though I occasionally get left sided face droop) and my neuro doesn't seem to think that's it either.

GBS itself doesn't have a relapsing course but the chronic form of it, Chronic Inflammatory demyelinating polyradiculoneuropathy (CIDP) does. A friend had what they thought was GBS but kept having relapses so after five years they finally diagnosed him with CIDP.

[stevemills]

If it is CIDP then nothing is showing

My Visual Evoked Responses came back normal, but i'm not sure how confident I am in this. The test was a disaster. The room was bright because the sun kept coming through the blinds and I would see glare on the screen. They tried to move me around for the glare, but it was still too bright. The leads would periodically disconnect or the test would suddenly stop. They kept talking to me non-stop, would not shut up. Nothing went right. Isn't the VEP supposed to limit stimulus to just the screen??