exhaustion

#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!

There are times when what has been becomes suddenly much more real then usual.
Not as a flashback - they're definitely different - but more like a realization that what's in my memories, in my patterns, in my body and mind has really happened, some time ago in my life.

What surprises me the most is:
I'm not fine, even though I'm better than in previous months and years, but, the hell, compared to before it's like I'm in Heaven.

It doesn't bring me the positivity and mood switch I might expect, it weights the same, most of the times, but it surely helps me redimensioning the whole picture.
I'm grateful, overall, for one thing: now, when I have my crisis, they're still bad and, sometimes, worse than other times years ago, BUT they're crisis: they happen from time to time. (I'm not talking about being on low mood; to me, before, it was much more than that: tentacles slipping out of my head trying to choke me and smash anything inside and around me).
I can feel my mind clean, and, yup, I'm now crying, all of a sudden.

I'd never wanna go back to before.

A week ago I was writing a post I've never shared and, when recalling the bad effects the thing I was talking about had on me, I realized the list was very very long and very very painful and messy.
What makes it often difficult for me to comprehend my patterns and problems is that I tend to hide them, and then forget about them, over the years.

Thing is, there has been terror.
I don't wanna include the details, because I'm aware that for someone they could be not nice.

I shared this picture (search for Riftress on Pinterest, if you're interest - I really like these works) because it is one of the pics I saved back then.
Something have sucked up my own self from my life and I think it was the exhaustion from that period.

Crying helps me too.
If now I'm crying, it means it really has been hard.
Since I tend to hide and minimize, since people shared their issues with me and rarely listened to me, always ignored the signals I was pointing out and since things for me often changed - environmentally speaking - I tend to forget.
To me, now, it feels like I'm based on a void past.
It doesn't mean I'd wanna linger on it: just that in order to understand why I am the way I am today I need to recall.

Times like this one, though, makes me wanna go back that before and erase everything. Why it had to be so damageful.
Again, though, I tend to hide: none really witnessed in person any free expression of my mental state, so, then, it feel more righteous to minimize it. This confuses me.

Though I think it's not fair to compair: the same trauma can have different outcomes on different people; that's why I think crying is helpful -> it spots out the fact that what I'm feeling and thinking about - recalling - has really been a hardship for me.

But it seems impossible that all the dark lump has really left. Did it?
Instead of feeling and expressing itself in dark and full of --- ways*, my mind's just flat. That's the new pattern, I guess.
I've been backfired.
* I don't really feel at ease sharing details, again, but I don't know how to express it.

I still have issues to work on, sometimes - often - I just can take my mind anymore, I often have no energy to live my life, but sure it changed. Time heals.
And I've understood myself and other people better, in the meanwhile, which has been another fundamental turning point.
And I can't express how grateful I am whenever I get to become more aware then before. I love understanding.
So - I still can change and for the better.
There's and I have hope in it.

#Reflection #throwback #Trauma #Crisis #time #Understanding #past #Memory #Pain #cry #Life #mind #pattern #backfired #Healing #Awareness #HealingProcess #exhaustion #Monster #illness #MentalHealth #growing #growth #Present #Hope #change #Grief #Energy

I've suffered with long covid since March 2020. literally housebound. I was just beginning to get better after 2 years of hell , and bang! I caught the omicron ba.5 variant. Its been 3 weeks and i have a lot of my long covid symptoms back. I know it's early days but has anybody on here had long covid twice before? Im totally vax'd and boostered. Thank you in advance xxxx scared.

#COVID #CoronaVirus #longcovid #longhauler #exhaustion #Fatigue #UK

I’m so tired of being exhausted. I’m kind of in a limbo state as far as having my own place to live. I’m grateful to my parents for letting me rent from them. I just need to try to stretch my wings. I am so depressed and lonely 😞 day after day is the same. I’m so tired and depressed that so have a hard time even doing things I like to.

I need #Prayer I want to function as an adult. I feel like a child trapped in a man’s body. I have so many things that have held back my ability to function as an adult. My processing speed is slower than most people, so I have to chew on information for a little bit. I still have embarrassing habits that aren’t sins just not age appropriate. I know my Aspergers has a hand in this. And I feel ashamed to even mention this here I feel so sub-human and like I don’t have a chance to live as an adult.

I appreciate you all allowing me to get this off my chest. God bless you and thank you for listening and thank you for your prayers 🙏!