Encephalitis

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Clare Johnson at the MS Hike: "I can still take the gondola up, breathe in the mountain air & stand among people who truly understand the fight."

"Resilience isn’t about doing things the way you used to; it’s about finding new ways to keep moving forward. And this year, simply showing up at the MS Hike feels like a celebration of strength, connection, and hope."

Clare used to do the MS Walk – Denver to support a friend. Then in 2024 she got an MS diagnosis of her own. In 2025 she got encephalitis due to West Nile Virus and was hospitalized 41 days. Over months of rehab afterward she relearned basic tasks like how to walk again.

"Recovery has been one of the hardest things I’ve ever faced — and I’ve always been a tough cookie — but every bit of progress feels like a win."

#MultipleSclerosis #MightyTogether

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World Encephalitis Day

Hello everyone! I had to make a new account because I’ve just got a new phone, but I just wanted to pop on and say that today (February 22nd) is world encephalitis day! As I mentioned in my last post, I’m living with Autoimmune Encephalitis, and I just think it’s so awesome that we have this day for awareness! I think we could all use more awareness and acceptance in this world 🥰 wishing the best for you all!

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Hi! I’m new

Hi everyone! I just joined the mighty because I was looking for some community. I have Autoimmune Encephalitis and I just don’t know many people with autoimmune conditions. It’s been a super tough journey and I guess I was tired of feeling like I was going through it alone. I’ve been living with AE for about 6 ish years now. So yeah, I’m just looking for a safe space to talk with people who have similar struggles to mine. Thank you for making this space!

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My eyes are broken

I asked Meta AI if a narrowing optic chiasm can cause double vision. This is what it says:

Yes, a narrowing optic chiasm can potentially cause double vision, also known as diplopia. Here's why:

# Anatomy and Function

The optic chiasm is a critical structure in the brain where the optic nerves from both eyes cross. This crossing enables binocular vision and allows for depth perception.

# Effects of Narrowing

Narrowing of the optic chiasm can disrupt normal visual processing, leading to various symptoms, including:

1. *Double vision (diplopia)*: Images seen by each eye may not align properly, causing double vision.

2. *Visual field defects*: Loss of peripheral vision or blind spots.

3. *Blurred vision*: Distorted or blurry vision.

4. *Eye strain*: Fatigue or discomfort due to increased visual effort.

# Causes of Optic Chiasm Narrowing

Several conditions can cause optic chiasm narrowing, including:

1. *Pituitary tumors*: Benign or malignant growths pressing on the optic chiasm.

2. *Brain injuries*: Trauma or concussions affecting the optic chiasm.

3. *Infections*: Meningitis or encephalitis.

4. *Inflammatory conditions*: Multiple sclerosis, sarcoidosis or optic neuritis.

5. *Genetic disorders*: Certain inherited conditions.

# Diagnosis and Treatment

If you're experiencing double vision or other visual symptoms, consult an ophthalmologist or neurologist. Diagnosis typically involves:

1. *Imaging tests*: MRI or CT scans to visualize the optic chiasm.

2. *Visual field testing*: Assessing peripheral vision.

3. *Neurological examination*: Evaluating brain function.

Treatment depends on the underlying cause, ranging from:

1. *Surgery*: Removing tumors or correcting anatomical issues.

2. *Medications*: Managing inflammation, infections or tumors.

3. *Rehabilitation*: Vision therapy or physical therapy.

Consult a medical professional for personalized advice and diagnosis.

#opticchiasm #DoubleVision

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Regeneration

One of my health challenges is myalgic encephalitis (chronic fatigue). With this condition if you overextend, it causes a severe flare up of symptoms sometimes for days afterwards. I overextended due to preparation for Thanksgiving and birthday party for my adult disabled son. Yesterday I could barely move and had extreme pain in the whole body. I went to bed feeling very discouraged. But this morning I was thinking about the beauty I saw on my walk yesterday and I realized like the Earth I can regenerate. I will do that today and not be defeated.

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A diagnosis, sort of & serious confusion

#CrohnsDisease Hi so just like the title says I kind of have a diagnosis though it's not complete. One of my panels came back. The paraneoplastic one. It was negative for that. Celiac's was also normal, however vitamin B12 was shockingly low for some strange reason. I eat plenty of meat, eggs, dairy etc. I don't have Celiac's disease so the only other thing that can be a cause for that is Crohn's disease. Now I'm just puzzled because I'm having urinary problems like dark urine, clear urine etc without a reason as to why. I'm starting to wonder if my body is just shutting down. I've nearly passed out a few months ago have had ammonia smelling urine & sudsy urine. I even had a lethargy episode. The encephalitis panel & IEM panels still haven't come back. (Where is taking so them so long?)

Strangely, I have had episodes of upper airway infections in the past as well. I've done some digging on inborn errors of cobalamin & all I'll say is "It's not pretty."

With that aside, I may pursue legal action against my prior provider for intentionally hiding results from me without my knowledge. The provider also didn't want to vitamin B testing because he didn't feel like I needed it. Unbelievable! I'm NOT happy about it! His staff also refused my new providers appeal for getting records over to them. I gave them 8 MONTHS with no results! So, I'm basically filing a few lawsuits against them. Hopefully that place gets either shut down or somebody loses a medical license & fined heavily for what they have done is a big no no in the eyes of Hipaa! They have messed with the wrong guy!

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