Could someone help me make sense of this?

crypt0cu1t

IG: @crypt0cu1t
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I’ve had someone look at my mri before and they told me a few things they saw, but I don’t remember what it was as I’m like partially demented.

Can anyone here take a look at my upright mri, and tell me if it looks like I’ve got CCI or something else going on?

I have a diagnosis of autoimmune encephalitis but have not responded well to any immune therapy so far so I’m wondering if something else is going on

I also have a large arachnoid cyst that I believe may be contributing to my issues.

My symptoms are; Vertigo, diplopia, nystagmus, Palinopsia, blurred vision, altered consciousness, confusion, pressure in the back of my head, sensory overload and extreme fatigue/sleepiness/drowsiness.

Alongside these mris, I’ve also had a PET Scan that disclosed hypometabolism in the pons, medulla, cerebellum & occipital lobe. Could this be related to having a compressed brainstem?

I’ve been so hellbent on this being autoimmune that I haven’t even bothered looking into other possibilities, but now that I’m deteriorating so badly with no help from immune therapy, I’m starting to question if this ever was autoimmune at all.

could the hypometabolism in my pet scan in the pons, medulla & occipital lobe have been due to CCI all along?
 

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Strawberry

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I’m sorry I can’t be of help, but pushing this back to the top of the searchable board! I know there is a Facebook group that takes months to get into, and one that is easy to get into, but I’m not very Facebook educated. Even though I supposedly am on those boards… :confused:

I hope someone after me can post the links. I do know that Jeff is now working for one of the major US surgeons, so hopefully you can get his attention and his advice.

So glad you have finally decided to look in the structural direction, it’s so odd to think that structure causes autoimmunity, but apparently it does. I have both structural issues and autoimmunity issues, but am too mild for doctors to care.

Best of luck, and tagging @Gingergrrl because I believe she keeps in touch with Jeff, and I know she has followed your story. :heart:
 

Zebra

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Hi, @crypt0cu1t

I'm sorry you are not responding to treatment, but glad you still have enough fight in you to look for answers!

Jeff Wood, who you probably know from the CCI threads on PR, offers peer consultation services. I bet he would be very happy to look at these images and offer you some guidance.

I'm posting a direct link to the consultation portion of his website. Looks like he prefers to be contacted via email. I hope this is helpful to you.

https://www.explorewithjeff.com/

Edited to add: Looks like Jeff was last on PR in early 2021, but I will tag him here for you, just in case he still keeps a PR account. @jeff_w
 
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Gingergrrl

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Best of luck, and tagging @Gingergrrl because I believe she keeps in touch with Jeff, and I know she has followed your story. :heart:
Hi Strawberry, I haven't been in touch with Jeff in a few years. When I just saw your tag, I was going to look for his website but @Zebra linked it in the post above mine (post #3).

So glad you have finally decided to look in the structural direction, it’s so odd to think that structure causes autoimmunity, but apparently it does. I have both structural issues and autoimmunity issues, but am too mild for doctors to care.
I have a lot of experience with treatments for autoimmunity (from my own situation) but I don't have CCI and have never been part of the CCI FaceBook groups. I'm hoping that someone else will post who knows more about them for @crypt0cu1t.

I’ve been so hellbent on this being autoimmune that I haven’t even bothered looking into other possibilities, but now that I’m deteriorating so badly with no help from immune therapy, I’m starting to question if this ever was autoimmune at all.
I'm glad that you are researching every possible angle and it is good to hear your update.
 
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Hey man, how are you now? Did you manage to figure this out yet? I'm really interested in hearing updates from you as I've been going through very similar symptoms to you.
 
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