Porencephaly

#ChronicIllness #AutismSpectrumDisorder #Stroke #Disorder #SpinalCordInjury #Undiagnosed #CognitiveDisorders Where to begin. I honestly feel like one of those people kicking a can down a lonely street. I saw the new primary & wouldn't you believe it he was "get him in get him out" mentality. He was pretty rude, didn't know what he was looking at,& told me it's transient. (yeah having steatorrhea with undue fatigue & urinary issues that lasted 18 months is a short term issue, you know what, there right I should just sit here & do nothing.) I've noticed a pattern male doctors have this pride of there's nothing wrong with you just sit there & though it out. Honestly that's what I want to do because no one else cares... Where as the females actually have a tendency to care. I don't know what it is I really don't. But with that aside, I'm done with doctors. There you happy now? I have a physical therapist who has here own attitude problem & is determined to not only get nosey with my doctors but diagnose an fnd issue. Well I have no choice but to agree with her. But, 18 months has done nothing to help the posture so there's that. Now, I'm doing a full vitamin panel against this doctors will (I'm just a burden.) I told him insurance would cover this test completely & that I had a chat with insurance & they said it's covered. Oh, I did complain about my problems porencephaly, laryngocele, spinal cervical degradation, mildly low Igm etc. She recommended a disability coordinator for this mess but now that I don't have a doctor anymore what can we do?

You know as a kid I always wanted to have friends so that I could learn to be normal...well I never got that opportunity, sad, but what can you do? I used to be envious of not getting a diagnosis so as to find my village. That has changed ever since the porencephaly diagnosis in December of last year. Now I don't care so much anymore. I'm uncertain if we will find an issue with my vitamins. I can't wait to come into physical therapy tomorrow & be told your doing this on purpose, knock it off! What a world we live in oh well. My life has gone up in flames because not only do I have to work on my own issues but I have to work on other peoples attitudes.

#Doctors #appointments

Good morning everyone. How are you all doing today? I wanted to share that I'm seeing 3 doctors within a 3 week period. An ent in 2 days, a neurologist in a week & a spine doctor in 18 days. I'm becoming a little anxious about each of these appointments for a few good reasons. There's lots of pressure on me to say the right things & explain to them that my problem is real & is affecting my quality of life. Problem is the issue that is causing me digestive issues, swallowing issues/clicking throat, grip issues, posture abnormalities, gait disturbance/ wide based gait, tinnitus, tmj etc. I have proof of the digestive symptoms yes ew, but they may be critical in figuring out if I have an infection or not. The neurologist will need to figure out on top of all that if radiological findings are just porencephaly or something more sinister.

My guess for the first set of problems is an encephalitis of some kind. I've read about how infections can be dormant then occur suddenly after stress, excercise etc. Before we moved houses I got a pinched nerve in my neck that with correction unleashed its wrath on my poor body. I'm hoping the neurologist can piece together whats going on there. Bloodwork, urine etc have comeback normal so I don't know how we are going to detect something that is getting harder to find? The spine doctor will need to figure out why I have a posture lean. The ent will need to figure out if my swollen lymph node & nodule are benign or cancerous. There's alot we need to figure out & its kinda overwhelming. I hope all will be revealed soon. I'll keep you guys & gals updated as I learn more. Have a great day.

Hi. I'm new here. My name is Nick. I'm 6.3ft & enjoy traveling, swimming, music, being with my cousins when possible, I even want to get into model trains but would require a separate location as we just don't have the room in the house sadly, sometimes Lego's & sometimes games. My situation is unique because I keep getting diagnosed with new findings from different doctors & no one is putting it together. Over the course of a year I've experienced an alarming decline in health. Swallowing issues when I drank water with a throat click, a posture lean that came on from seeking chiropractor help due to pinched nerve that was causing me to fall. I saw genetics prior & all they came up with was a chromosome 4 duplication & a carrier for cep290. They deemed me as having insignificant results. Though the biggest discovery was the mri test & X-ray they ran Where they found porencephaly with a bunch of incidental findings like choroid plexus cysts, mucous retention cyst, & a hemosiderin deposit. The x-ray revealed upper scoliosis, & mild lumbar retrolisthesis. prior to that I was getting told from a board certified neuro physical therapist that it is conversion disorder & she tried to prove it & even When I told her the results of the mri she told me she still thinks it's conversion disorder. Idk maybe it's me & I need to just stop seeing doctors. The amount of spat I've gotten is incredible with my current gp having more care than all previous doctors combined. I even reached out to my geneticist who turned down all evidence I gave with there's nothing I can do for you & I have no recommendations. I even mentioned my cousin who has a speech disorder due to a cyst in his brain. I have 4 appointments coming up & I need someone to piece my history & figure out if we are after all this still missing something here. There's a few unanswered questions from my childhood/birth. This has taken it's toll on my family & I'm just fed up, tired & ready to forget about the medical field because they can't seem to put 2 & 2 together. If you want me to go more in depth as to what went on let me know & I'll post as much as I can on here. Have a good day :).