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    New member & looking for answers due to complex case

    #Porencephaly #story #exhaustion #help #Misdiagnosed #underdiagnosed #complexcase #26years #symptomlist #rejected #Support #LongPost

    (If you took the time to read this your amazing, seriously!)

    Hi. My name is Nick. I'm new here. As much as I loathe this, I'am a complex case. I've been dealing with an unusual dilemma. I get diagnosed with one set of diseases, then getting a second & third set of diagnosis that don't seem related to the 1st set of diagnosis. What do I mean? The genetic test are the first set of results. Then the porencephaly with other incidental findings are the 2nd set of diagnosis with the 3rd and most recent set being due to my throat symptoms: adult dysphagia, adenopathy, & neck crepitus with manual right shift of trachea." I can't be overthinking this but, I can't shake the feeling something is wrong possibly beyond the scope of porencephaly. I got accepted by nord for the campaign but that was about it. My rare disease submission never got posted & I got turned down by my geneticist for further testing with the remark of "There's nothing else I can do for you." *Even though I made mention of my cousin having a cyst that causes speech issues.* ( thanks alot.) Sigh* depressed face*. Oh well, guess I look forward. Along with neurology & spinal specialist in may I now have an neck ultrasound with possible echogram later this month on top of an ENT in late April. One might argue I'm doing this to myself but that would be the partial truth because I let something possibly dangerous get away with tearing me apart even though all the symptoms are painless.

    Why? Why this sudden deterioration in health as of a year or so ago? All the waiting has lead to partial answers. I almost want someone to sit down & figure out what I should focus on treating & what needs to be ignored. Sometimes I wake up thinking about wanting to make a model train set or traveling to a distant place & enjoying it. Too bad the former is expensive & requires too much space for our basement. The latter doesn't happen enough for me.

    I'm exhausted & ready to just give someone all my records/history & just say "figure it out." I've been wanting this to be over for a good while now but new things keep coming up & I feel like some time soon I'll stop going to doctors because I don't want to deal with the process of getting surprise diagnosis ten.

    I've had issues since birth with a neonatal stroke that we now know has turned cystic & has given us a piece of it's mind having been through many doctor visits throughout my 26 years of my family & me searching for answers. Here's the rundown: List of symptoms

    Larygnomlacia-infant historic

    Tinnitus-started at age 15

    Tmj-age 15

    Eye tilting up-age 15

    Floaters-age 15

    Dysphagia*~2019 couldn't swallow liquid properly.

    Pinched nerve in neck~2021 got better with chiropractic intervention diagnosed as pots.

    Neck/throat clicking same time as dysphagia & pinched nerve. Got better with chiropractor but still have some dysphagia & throat clicking.

    Feeling of food being stuck in throat*~2019

    Recently diagnosed adenopathy, esophageal dysphagia, & neck crepitus.

    Chiropractor caused spinal lean with digestive upset in early 2022. Digestion is ok now. But posture lean is still an issue.

    Recently diagnosed through mri & x-ray with porencephaly (brain cyst) this took 26 years to diagnose, mucous retention cyst, hemosiderin deposit, choroid plexus cysts & scoliosis of upper region with mild lumbar retrolisthesis.

    Grip weakness- started after leaving chiropractor in Feb. 2022

    Alarming rate of deterioration from being relatively healthy to needing cane due to posture lean. Most recent symptom is waking up to my left arm on my chest & having difficulty keeping it straight.

    There was a change in walking pattern as of a few years ago due to coordination challenges since toddlerhood.

    At birth I had a neonatal stroke looking like a premiee at full term. There was an undescended testicle (corrected at 6 years), 2 small holes in heart that healed on their own, microcephaly concerns, intrauterine growth restriction though grew out of it very quickly to 6ft 3in, & thrombocytopenia at birth.

    Have strabismus, nystagmus, hyperopia, optic blurring in right eye.

    Posture lean causes opposing foot to stand on toes.

    Followed closely as a child but was dropped when we moved states in 2011.

    Been in colorado since june of 2017.

    Use to have sensation in left arm of pulling sensation when peeing.

    Genetics testing according to the geneticist is insignificant but carrier for cep290 maternally & have chromosome 4p31.3-32.1 microduplication syndrome paternally with unknown significance which falls under chromosome 4p duplication syndromes (only 85 in the world.)

    Also have unusual anal quivering (seldom talked about)

    Have seen multiple doctors including neurologist (seeing one in may.), 2 physical therapist, 3 chiropractors, , neuropsychologist (childhood), on my 3rd primary doctor & genetics. I'm also seeing a spine specialist in May.

    In tears* someone help me put this all together because it's destroying me!

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    #Abuse #Survivor and the #Withdrawl After Sharing Your #story

    True to my nature, I share candidly about my childhood and ongoing abuse. Being honest is not hard for me. However, remaining in contact with people is my weakness.

    As an example, I shared raw information about the abuse of my childhood, which has repercussions of ongoing control from the same abuser well into my adult life. This obnoxious toxic behavior is confronted whenever we engage in conversation. I “brush” it off, when I encounter it. However, the wounds of the past are evidently not healed because puss and decay fill the emotional scares that remain. How can they heal if the same manipulative controlling tendencies are continuously bruising the soul?

    Any thoughts on withdrawal when vulnerability is expressed, #TheMighty folks?

    Healing is occurring. But the social refrain from being vulnerable embarrassingly keeps me at a distance as if the childhood secret of esteeming the physical abuser, publicly, must remain behind closed doors to keep their reputation intact. I was the “clumsy one” when the scars were evident at school, church, or at the market. The abusive parent was honored for having to raise such a “clumsy” child. #ChildhoodAbuse #Reality

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    BPD - Accept Yourself & Others Will Respect You. BPD For Me Is Normality. Don't Be Ashamed of You BPD

    I suffer from Quiet BPD. Now to be honest with you it would be abnormal for me not to be living with bpd. For me this is normality because I never lived a different way. What about you tell me your story#BPD #story #MentalIllness

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    My Life, my Story #Life #story

    My life is an open book… BUT I am the Author.

    What do you think this means?”

    For me, It means that even though I tell my story, I’m the only Author and no one has the right to tell you how your story ends. #Writing #WritingTips #WritingThroughIt

    1 comment

    #story #Chat #Christian

    Anyone have anything interesting going on? Or prayer request? Praise reports? Jokes?


    For so, so many years I have developed this need to get a second opinion about my reactions to things to know if I'm being overly sensitive or unreasonable. 9 times out of 10 I'm told my feelings are valid and I'm totally within my right. On Thanksgiving, my brother in law flew off the handle on me for literally nothing: I decided, after sitting and listening in silence to he and my sister go back and forth on various political topics, to excuse myself from the conversation when he wouldn't let me speak for basically the first time in the whole talk. He shouted at me to "sit your f---ing ass down" and so /I/ raised my voice to explain why I absolutely would not. Next thing I know, he's lunging at me, his 19 yo son is holding him back (having ran up the damn stairs hearing it escalate) and my sister pushing me behind her to put two bodies between me and him. Everyone (except him) agrees that I didn't do anything to deserve it, but my sisters are expecting me to forgive him when he eventually apologizes. Nevermind that he doubled down this morning that I'd disrespected him in his house (nevermind that he yelled first), my sisters insisted it was his brain injuries, steroid medication, and how much he'd had to drink. MY thing is this isn't even close to the first time this has happened and even though he's never lunged at me and demanded I get out of his house, this isn't the first time he's tried to force me past my boundary during a political discussion that I know he (we when it's me and him) can't handle. My sister's called me out for being a grudge holder and my dad and best friend point out that not forgiving him in the event that he does apologize is not a grudge, it's setting a further boundary and message that this is not (expletive) okay. So going back to my initial topic of this post, I'm sick of requiring validation of my interpretation of situations. If it were up to my sisters I'd be forgiving him just for the sake of keeping the peace and because he's got all of these things going on with him. But here's the thing: a LOT of people have brain injuries, a LOT of people take steroids for arthritis and other things, a LOT of people drink. Why does this excuse any of what happened when he KNOWS he has a brain injury, he KNOWS steroids makes him mean, and he KNOWS he's easy to anger when he's drunk? Excuses, excuses, and MORE EXCUSES. I am so grateful for my dad and my best friend letting me know that I'm completely within my right for this "grudge" where usually they're the first ones to call me out for doing so unreasonably. But where I really want to be, is able to decide for myself how I should react, how to feel without needing validation and without feeling pressured based on what other people say. And that I think will be the focus of my therapy when I start back. #story #trustingyourself #selfvalidation #Abuse #Forgiveness



    Guy walks down the street and sees another man asking for charity. The homeless man is downtrodden and ashamed. Ted( the traveler) gives the homeless man (Echo) some loose cash. Echo expresses his gratitude. This generosity isn't taken for granted. Echo says the traveler will find peace in time. He offers Ted advice- to continue on the path of compassion. Ted is taken back. AMAZED at the homeless man's humility. Ted asks" ...what got you here- homeless and all? " Echo replied "17 months ago I was a therapist helping those in need. Very few listened and/ or followed through with my advice. Covid hit. People freaked and sheltered away from everything and almost anyone. I lost faith in myself...I became lost...drifted here." Ted was shocked. Echo sensing Ted's confusion said "listen to me...we're going to be just fine. Keep being compassionate and kind...the wave is coming."

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    Can we heal our inner child?

    Guilt and shame can leave deeper scars on your soul than any knife on your body. After years and decades of silence, I'm here today to stick up for my younger self. I'm here today because I believe myself enough to say out loud:⁠⁠

    "I'm a survivor of sexual childhood abuse"⁠⁠

    Childhood abuse is such a hideous crime that I had a hard time believing myself. How could my father do something like this? To a child? To his son? He supposes to be my rock. Yet he is the one who hurt me the most.⁠⁠

    But even after I cut him out of my life his words stayed in my mind. I let him live rent-free in my head. And I believed his words more than my own. Hurting myself, because I felt worthless. Hating myself for what he did to me. And doubting the voice of my inner child. Neglecting the wound he cut into my soul.⁠⁠

    To heal I had to accept one simple fact:⁠⁠

    That it's not my fault, but it is my responsibility now.⁠⁠

    Because the wound he cut into my soul dripped onto other people.

    I could not live with myself hurting those who love me. Just because I was hurt by those who should have loved me⁠⁠

    There had been many tough steps on my path of healing. One of them was cutting myself loose from my abusive father. I wrote an article about how I escaped his basement in 34 days. Thanks to Fear Setting and Five Simple Questions I could change my life in unimaginable ways.⁠⁠


    Thank you for your time and love!




    #PTSD #Depression #Abuse #Trauma #Bipolar #story #innerchild


    #story and #Life

    I just write this to calm down myself ☺️.
    I'm tired to think and hear what i will take for college not knowing how and what should i take. Firstly, they will not support me for doing if i don't do what they want to be me, as long as i will obey them then that's it they will support me. Second, they don't really have that emotional support for us but doesn't bad for me cu'z growing up- being matured all day, I learned everything. Third, they said that they will support me for what i will take but for me I'm undecided and mixed feeling because if I did a One Mistake (like: one of my subject is dropped/I will call them need for help for my things) they will talk about it every single day. My sister has a psychiatrist because of it (because she followed her dream not my parents) and I know my parents well so I'm advanced thinking what would happen to me.
    Lastly, when my mom meet the psychiatrist of my sister she doesn't want to stand on because she is a mother and she know perfectly and even scolding us like For The Sake Of Us and telling us to repent our sins as their child to God (cu'z she said we were wrong not them.
    Sadly, my father is convinced for everything what she say to him (honestly, you will get emotional if you're one of my siblings cu'z they want you to be their version and We can't do it). Rn, that i will be a freshman if I decide what i will take, I will obviously drag my siblings and help them to reach their dreams.
    Psychiatrist said to my sister that also mom had a bad influence on what we are today and I couldn't Agree More.