If I only had a brain

A lot has been going on, but with blurred vision and tremor, it takes forever to type and my speech isn’t much better. I really need audible and dragon!

I’m going to attempt a timeline of events because it’s just easier for me.

Since 12/22, I suddenly developed severe restlessness, tremor, insomnia, blurred vision and confusion. The restlessness has so greatly improved but my other symptoms are worse and more numerous I’m disoriented and get lost and panic in familiar places, I stumble when I try to walk, I “zone out” and it takes me hours to complete a simple task. It can’t make decisions, have limited short-term memory, I stutter or suddenly can’t speak and when someone is speaking to me, it may as well be gibberish. There’s a lot symptom-wise, but I’ll save it for part 2.

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I’ve been to the ER where they did a brain CT, labs, IV fluids and an EKG. Mostly normal results, but I guess sobbing when you are in earshot of the docs debating whether to admit it or discharge you with no answers, of course you’re concerned and upset! No, I’m treated for PTSD, so I must just be imagining the 2 blown pupils and difficulty verbalizing! Clearly, I’m just a psycho or a junkie

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Since then, I’ve seen 2 neurologists, my PCP, pain management, outpatient lab, brain MRI, and I’m supposed to have a sleep/wake EEG (no way, never dealing that torture ever again) and see my neuro-ophthalmologist.

So far, my condition has been confirmed to be Encephalopathy with tremor. It’s essentially a form of dementia with a splash of stroke and parkinsonism, but is always from an underlying cause. It can sometimes resolve with treatment of the disease causing it. It can also be progressive or permanent. Once my labs come back, I’m hopeful it will identify the cause and I can get rid of this cognitive impairment and begin occupational therapy to get as close to independent as possible.

I can’t do any of the things I usually enjoy because my vision and shaky hands. I get confused and feel like I’m in slow motion. I feel really lonely and bored. I don’t go out, because I don’t want to burden anyone. I now have to be pushed in my wheelchair. I don’t want to be a job instead of a friend. (These are just my feelings, nothing anyone has actually said anything about).

I’ll go into detail in my next post and will address any questions, suggestions or comments you leave. I have been reading them all, it’s just very difficult to concentrate, understand and process. It’s as if something has attacked my brain and gained control of it.

I truly hope the blood they tested shows evidence of the cause of my Encephalopathy. I want to regain what I’ve lost. I’ve accidentally taken the wrong medication, panicked because I didn’t recognize my surroundings, stumbled and injured myself because I can’t balance… Oh, and it would be nice to take a real shower and not forget how to tie my shoelaces, remember to eat occasionally and not take over 10 minutes to put a sock on my foot!

I do periodically post to instagram, but it’s a little overwhelming, so don’t be offended if I don’t respond quickly. I can assure you I’m doing my best to keep up and your kindness and compassion is so encouraging! No one here has pitied me or been insensitive and that has been a blessing.

XO,
Dani

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10 thoughts on “If I only had a brain

    • Yes, I used to get false positives for Lyme, but I had more comprehensive testing for Lyme along with the West Nile Virus testing. Only positive for west nile. I have been diagnosed with POTS, but I’m always tachycardic. We are still looking for the cause. Thank you so much, Bethany! You know your stuff! I really appreciate you reading and offering your knowledge! xo Dani

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      • My daughter has POTS. She just got back from the MAYO clinic. Did the tilt table test. Got a diagnosis. She has your exact symptoms. They are trying her on corlanor for now and may add a betablocker. Her most frustrating symptom is head fog , tremors. High heart rate. I feel for you I truly do. I know the suffering this can cause, the isolation. I myself have a muscle disease and tested positive for Lyme disease so that’s why I threw those things out there since we have spent sooooo many years getting test after test, doctor after doctor. Praying for you that you get answers and treatment

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  1. Dear Dani,
    My heart breaks for you in this situation. I pray this passage encourages and comforts you:

    “When Jesus came down from the mountainside, large crowds followed him. A man with leprosy came and knelt before him and said, ‘Lord, if you are willing, you can make me clean.’

    Jesus reached out his hand and touched the man. ‘I am willing,’ he said. ‘Be clean!’ Immediately he was cleansed of his leprosy.” (Matthew 8:1-3)

    Jesus is HERE. He Loves you, and I pray that He heals you up soon. You are so Loved throughout ALL of this Dani, by Christ, and by those He’s put into your life, us. I pray that You would be surrounded and warmed by that Love, as it surrounds you, and you allow it in.

    Never feel obligated to answer my comments or anything. I pray You would rest up, and let Christ do the healing.

    I can’t imagine what you have been through; but I am lifting you up to the Savior who does. You are so very Loved! I pray Ephesians 3:14-21 (NLT) over you.

    In Christ,
    Annalee

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  2. I am praying that this new “diagnosis” will lead to the right treatment for you. You are one of the bravest people I know & I know that our Savior will bring you through this, Sis!

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  3. I am long time Nurse and unfortunately the stigma of having any type of psych diagnosis creates a bias in ow you are cared for and I am so sorry you are going thru this….don’t give up and be persistent…..keep going until you find a Doctor to listen to you and work hard to diagnose and treat you…be the biggest pain in the ass you ever have been in your life!! You are in my thoughts and I continue the fight for my patients to make the medical community listen to them!! Best wishes ❤

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