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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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Why was I born - am I loved.

As a 51 year old man and veteran, who has a plethora of memories of abuse, I daily wonder why was I born. My past is a chaos of memories, sisters making out with me when I was just a kid and they were in highschool, to a much older male cousin touching my privates, to an old friend who as me if I wanted to rape his niece. This created hate for offenders, and a pure love for children that I fear the outside world wants to corrupt. I have spent 8 years without a womans touch and have felt rejected and this is while taking care of an 89 year old mom and attending a church. I don't know now that I trust anymore if that church is guiltless of pedophilia. One day a young girl in walmart stood up in her cart and in my peripheral vision I saw that she stripped her pants down. This made me feel like children sensed my concern that I was beautiful to them but that the world was changing. I am in AA now because of feeling suicidal over my private thoughts that are not always pure like they used to be. When I ride my motorcycle and travel and stay somewhere at night, I feel there is dark world of men who want to hurt me for caring because they feel they are in danger from a vigilante. I know from what I have seen out there, dangerous men are box truck and tinted vehicle men, not riders. Not all riders are on the same page though. I rode from NY to Phoenix with burns on me from self infliciton and the burns made me feel stronger. Where is Jesus I asked? 30,000 miles on 3 bikes in a year twice from NY to Phoenix in storms and I have to believe I am alive because God cares.#rejected #onlywantedlove #notthedevil #whohasbeenhere #whywasIborn #whomessedupamerica #Molested

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Feeling lost, Heart Broke, Alone,…etc. 🥲🥲

What else do I have to do! Do I need to Scream it from the Mountain Top, Tatoo it to my forehead, Write it in Bold black letters, Engrave it in Stone! 😭😭 When the H** is he going to get the Clue, the Message that’s staring him right in the face!! When is my husband going to Stop being So D** Blind!! I’m DONE wasting my breath!! What part of I NEED MORE LOVE & AFFECTION in my Marriage DOESNT HE GET!!!! If he wants me to Stop thinking & feeling that he’s emotionally involved with someone else, or that he’s lost love & attraction for me, or feeling that he’s doing something he knows he’s not supposed to be doing on his phone, or that he’s talking to someone else,…..then D*** IT, START SHOWING ME THAT YOU LOVE ME & BE MORE AFFECTIONATE TOWARDS ME & STOP LEADING ME TO BELIEVE THESE THINGS ARE HAPPENING & I WOULDNT THINK OR FEEL THIS!! SIMPLE AS THAT!!!! I DONT ASK FOR MUCH!!!!! I have NEVER felt SO ALONE in my life!!! 😭😭😭😭😭 I’m SO sick & tired of Breaking inside! Every inside part part of me feels So Shattered into a Million Pieces😭😭😭😭😭 it’s Already enough that I have NO friends 😭😭😭😭😭 Now I’m losing my husband!! If it weren’t for my girls, I Seriously would have left this world a Long time ago! But they are the ONLY reason im STILL Alive!I’m So SICK & TIRED OF FEELING ALONE, USED, REJECTED, ABANDONED 😭😭😭😭😭 WTH DID I DO TO DESERVE THIS😭😭😭😭😭😭😭😭 #fedup #depressed #alone #rejected #Abandoned #lost #Shattered #BorderlinePersonalityDisorder #PTSD #lovehurts #BarelyHangingOn #MarriageSucks


When support is a lie

My sister is an RN who worked in a mental health setting for a couple of years. She has always tried to be supportive, but she's a big proponent of pick yourself up by the bootstraps kind of person. When I had a breakdown several years ago that caused a stutter, she kept trying to blame it on my medication even though my psychiatrist, therapist, and PC all said it was not. So fast forward to this summer, when my nephew told me that she was telling her girls that I was faking that stuttering as a ploy for attention. Then this past week he told me that she talks to her oldest daughter and son about how I am also faking my mental and physical illnesses for attention, that I'm just hurting because I need to lose weight. Now I was already feeling unwelcome in her new house because she pretty much ignored me and called me the day before because she had bought new furniture and I was too heavy to sit in it. I don't think this would hurt so bad except that I was there for her whenever she needed me. I was there when she went to school, as she was pregnant 5 times over 4 relationships, when she needed someone to watch her kids while her husband slept on the couch. I spent years babysitting her kids, helping her to get through school as she worked toward her master's degree, and when I've needed her the most, she not been there. I feel so betrayed, so invalidated, and rejected by someone I've always been there for and will continue to be. I guess it's not really that surprising though, as she also denied me through most of our school years. #shed #rejected #Depression #Anxiety #Sibling #mentalillnes #Nosupport


Where I am today #lonely #depressed #rejected #Pain

I live in fear. I am afraid of other people.  I am afraid of you.  I am afraid of living, afraid of rejection afraid of loss.  My life thus far has been painful and afraid.  I so much crave for friends and a relationship but my fears, pain and past losses show me what happens if I even try.  Rejection.  I am always waiting for it.  I feel rejection is going to happen, so I reject friends and relationships quickly, before I have invested any emotional capital into the relationship.  I have been told this is sabotage of my own relationships to avoid expected pain which has the same outcome as being rejected.  I don’t know how that could be true.  The pain of rejection is much greater than the pain of loneliness.  I don’t really know if I have expressed what I mean.
I feel afraid, empty and lonely. I have stopped trying to meet new people.  I know people will reject me before I even see them.  I know this because I have been conditioned by society that poor overweight men are unattractive losers that are there to be made fun of and shown only as an example of what not to be when you grow up.  I went through grade school, middle school and most of high school being bullied and rejected.  Laughed at as the butt of many jokes.  Pushed around and punched.  I was taught my place in the world. 
As I write this I would welcome death.  Not that I am suicidal, just that I don’t see the world as a good place.  I wake up saddened to be alive.  This world is ugly and mean.  Death would be an ending to my pain and loneliness
For the religious, I cannot believe there would be a god that would allow suffering on the magnitude that exists in this world.  There is no god.  And if there is a god, it has a great deal to answer about why create a world with extreme suffering.  So please save your prayers for someone else.  I already know that praying is worthless. 
I wish this world was as I was taught as a very young 5 year old boy: a place of wonder, beauty, joy, happiness and love.  But I have been through the world and from my experience I know the world is a place of ugly cruelty, meanness, hatred and rejection.    
The only constant in my life has been the depression, rejection, loneliness and emptiness.  And I hope my life ends soon so I can return to where I was before I was forced into being.  Return me to stardust.

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#Therapy for lifelong #Trauma #PTSD 1st time at 37 #help !!!

#Trauma #Therapy for #PTSD 1st time really “ready” to open up with #Psychiatrist at 37 #childhoodtrauma #abuse #neglect #fearofabandonment #psychologicalabuse from a father that I would describe as #CharlesManson with a #TheBible in one hand and #Alcoholism in the other. In addition to a family that #rejected me completely so much so that on both sides of my #Divorced #Family I had rules that if I walked in the room within one minute all of my cousins had to leave my #physical presence because I was just #different but never had #behavioral #Problems just major misunderstandings and what seemed like a lot of #bad luck because of the many #Labels that seem to get stuck to me throughout the years in public #Education . So I was sent to live #alone with my #Father at 11 on a #cult like farm with no access to the outside world (no modern technology including TV, Radio or Phone) and he #brainwashed me as a #Child to never speak to anyone or they would lock me up and throw away the key or call me a liar and ignore me completely. So I have major #Trust #issues and have no clue where to begin when I see my #Therapist via video this week. I also have #ADHD with a #mind that is #hyper #creative and #super analytical seems like a #Gift and #Curse when expressing my #Thoughts and #Emotions #help #Advice #ParanoidThoughts


what avice do you guys have about getting a job?

im 25 and ive never had a job. i volenteer alot and i have a nice looking resume and all that. ive gone on indeed and ive applyed to over 98 different places and i havent had any job interviews. im legally blind and cant drive other then that you'd never know that i have any issues. it seems like im just wasting my time at this point and i need to reachout to someone. im really deperate because i have found that my selfesteam and confidence is directly linked to feeling that im helping or that im needed.

there are no employment agencys where i live and alot of them seem to be a waste of time aswell they have part time work one day a week everyother week, type work. im now at a loss as to why i never get called back or why its so hard to actually find work when i see these burnt out druggies and alcohalics getting high paying jobs from week to week like its nothing. i just bully the crap out of myself telling myself all these negitive things about myself as reasons why i didnt get called back. i just begining to hurt inside and feel unwanted.

#Anxiety #Depression #Disability #LegallyBlind #rejected #why #Work #Job #Jobs #self-doubt #Welfare #Whatswrong #Whatsthepoint


Where’d they go?

I feel like I am being abandoned and rejected by all of my friends. I know I talk about things going on and how I feel alot. I don’t want to be this depressed n draining person that nobody enjoys being around. I currently have no close friends and spend every weekend alone. I am glad I have parents that live here and invite me over on the weekends. The truth is though I miss hanging out with people my age. I miss having friends. This year every friendship,old, new or close has either gone or fizzled out. I just want people to stay in my life and want me around. #bpdsymptoms #lossofbestfriend #rejected #FearOfAbandonment #brokenontheinside


How are you having a relationship with mental illness?

I‘m 26 now and still #single. I‘ve never been in a #relationship . Sometimes I wonder what‘s wrong with me. Then it hits me: I‘m just crazy, that‘s why. I was in love #Love with somebody when I was 15 but got #rejected. It took me over 2 years to get over that. I‘m not even sure if it was him I couldn‘t get over or the fact that I‘ve been rejected.

My #Depression and #Anxiety always kept me from trusting people to the fullest. Of course there were also other things that contributed to my #trustissues with past friends. But before that I already couldn‘t and didn‘t want to open up that much. I had the feeling I was always just scraching on the surface. I didn‘t and still don’t like talking that much about my feelings.

Plus I hate being touched. I don‘t really like hugs or being touched, be it accidentally or on purpose. When someone touches my arm or shoulder even just for a moment, my skin tickles and it doesn‘t feel good. Most of the time I flinch. I wonder if people don‘t notice or just don‘t care. Maybe I‘ve become very good at hiding.

Thanks to my #Medication I can now hug at least the people I love and it doesn‘t feel that bad. Sometimes it‘s even pretty good. I think I‘m getting there, step by step. But still I don‘t think I‘ll ever be truely comfortable with touching people. Of course this is also the reason I‘m still a virgin. Sometimes I‘d love to have sex but I don‘t want to be touched or touch someone else. I don‘t even know someone I‘d like to sleep with, most of the time.

Then sometimes I‘m #obsessing over people I don‘t really know. Movie stars from different countries I‘ll probably never meet, the good looking neighbor next door that doesn’t even look at me twice. I fantasize about being in a relationship with them. Sometimes I can‘t even sleep because my thoughts just won‘t shut up, even though I know this isn‘t real and certainly unhealthy.

Can anybody relate to that? How are you making relationships work when you don‘t like being touched or opening up? This is a mystery I couldn‘t solve yet. Now I‘m not even sure if I could even love someone again. How do you do that?