[Yismymindblank12]

I am very distressed and scared, I am practically losing my mind. I am experiencing my symptoms now and that's why I cannot sleep. I have been dealing with these symptoms all my life and I would like someone to help educate me what I am dealing with and I need someone to not to exactly know, but at least give me a better idea what I should ask my specialists on my next visit. I just had a blood test bout a month ago for paraneo type syndromes negative and my MRI is normal. I just had a coma from my fault resulting from these symptoms and accidentally made my progressing worsening symptoms worse from both an two different incidents two weeks apart from drugs. The thing is the drugs didn't cause the symptoms, it just suddenly made them get worse faster. I had this happen after my event of being admitted for a near death experience of encephalitis bacterial kind. They took an MRI and saw my whole brain was affected and was expected to die or more likely to relearn how to walk, talk, eat, go to the bathroom etc., I was very fortunate to make a miraculous recovery in a short amount of time after my lungs collapsed and lost oxygen then into a short coma for 20 minutes. It felt like it took thousands of years for me to wake up literally this happened when I was 15 bout to be 16 in 2009. Now since I just finished a short back story on that, I have to go even further back to help explain this. I was born with very different life, I grew up finding out and especially at 14 years old that my imaginary friends and scary lsd type visual field for what most people would call it.. Sorta like alice in wonderland literally was a hallucination and not real. During that time, I had a long medical history of numbness and hyper sensitivity and still have these symptoms today, just they have gotten very much worse. I feel pain on a much higher threshold on one half of my body and the other numbness or little to nothing. I can easily burn myself on the side that has the numbness and cause bad scarring because I won't feel it till bout a couple seconds more than most people bout 5 at the most. At that time I get usually 2nd to 1st degree burns on accident, I found this out in boy scouts every time we used a sautering iron for making art or something and I grab the very hot tip. I also have been born with random jolts like I get this rush in my head like I am bout to fall asleep and wake up, not like narcolepsy I am fully awake and not tired. Like I either get a white flash of light or like a pulse in my head and I jolt. Almost all the time it's a minor jolt outside when my body moves, but in my head it hurts a lot. I have gotten used to it for many years now. I had one generalized seizure at 10 I believe after playing a videogame with racing fast patterns. The thing is I had these intense pulses more in my dreams and sleep, I call my nightmares are scary themed dreams that result in this pulsating pain only short but very painful once woken up. I also deal with very graphic and unusual hallucinations from dreams and awake. I don't like talking bout it to doctors, because they think it's psych related all the way, yes I have PTSD on a different note that have worsened my night terrors as a child. I will not go into detail because it is more irrelevant to my current and ongoing situation that had these symptoms linked back to then. I have insomnia and very high energy from birth, I never sleep much, I always ran around. The only time I got fatigued badly is when I got no sleep after 3 days with less than 6 hours of sleep in those 3 days. My hallucinations happen regardless no matter what, I wasn't exposed to the stuff I am hallucinating and they are very difficult to describe. I used to have 2 years ago a feeling like my head was dripping water down my head on the frontal area of my brain on the right frontal cortex chunk side. Basically I would feel my head thinking there is water trickling down the side of my head and it's completely dry and sometimes goes down my right cheek and still no water. I called it my brain was leaking symptom, I had tourettes symptoms caused by psych meds once and they have came back recently because of my worsening symptoms. Basically the trickling water symptoms are a example of how vivid my hallucinations are, I had that, people touching me with hands massaging me, seeing things, hearing things vividly, and painful physical hallucinations that involve a feeling of pinching or a feeling like I a being bit by a bunch of fleas. I am very sanitary and take care of myself a lot. I never had bedbugs nor fleas ever. I did illicit drugs for a very short amount of time, only weed not long and had Molly or x with lsd poured on top once. I am not a heavy user, I have no addiction problems, mainly because I have had a huge dosage of morphine for my spinal tap and quit smoking cigarettes, because they didn't do anything for me. My body produces, very powerful numbness, and good feelings alone without the drugs ever since I was born. I can't find it addicting at all it actually hurts more than feels anything good. I get sometimes very nausea symptoms, but never vomited from my weakness on my muscles and stomach. My vision is always blurry now and I have to get glasses again, the only reason I got rid of them before because they caused stroke like symptoms at like 10 or 9 years old. I want to sum this up, I am very concerned my current symptoms are "numbness all over", "weakness in muscles" all over and when the weakness is internally for example my stomach, I get really nauseous, I still "hallucinate all my life everyday" and my life is very terrifying from this and I do my best to keep my head on level, because my former psych doctors I no longer see don't know and generalize me in things they don't understand. Walking coordination standing sitting and lying down is very difficult with sometimes lightheaded dizziness, but I have my internal compass messed up and feel like I am falling on the side of the wall alot as if it was falling down onto that side of the wall. Sometimes short sporatic migraines, not often anymore. Nerve tics, jolts and tremors. Loss of hearing gets very quiet for no reason or very very loud, always a hazy foggy vision. Poor coordination, trouble talking or slur speech and swallowing from the weakness. Amnesia and severe short term memory loss, like after less than a second to five seconds I forget everything bout my whole life and gets recovered soon after. The coma happened recently in last november, like it felt like I had a huge rush of something then went blind and passed out on the ground and my body was found out cold with no pulse, and the pulsating throbbing seizure like pain caused my body to hurt like hell. Visuals were damaged definitely and I was in hypothermia because I was unconscious on concrete driveway in 29 degree weather for 15 minutes laying on the ground out. That's all, but I'd really appreciate anything for feedback on what you might think it is or what I should tell my specialists to look for, because they have made me wait for too long and I am getting much worse where I am more bedridden or immobile now a days. Too many symptoms to put down that are definitely connected, but again please help me explain what I should ask my specialists to look for and help me find the answers I need.

[Yismymindblank12]

I want to add that I am now, suffering the pain, tremors, and ticks, I have pain in my joints and bones. My skin feels so numb and on fire, not like a skin rash but the air and fabrics irritate my skin. I am done hallucinating for the moment, but still always have auditory hallucinations, my visual ones just ended but they'll be back. I am bedridden now, and was crying a lot now, because I am very stiff, numb, aching all over, skin feels like it's on fire from the air blowing on me and anything else that slightly touches my skin. Like my skin feels numb and the only thing I feel is the fire irritating feeling. My nerves are very overactive. My head feels light and not really dizzy, but very weak and my muscles are feeling weak as well. This has been ongoing from mild last year to last summer to now very crippling and I lost my job because of these symptoms last December. I don't want to be on benefits, but it's more evident doing basic things is very hard. I never was like this before and always was healthy very healthy. I guess I was born with this and it finally is showing it's head now.

[Yismymindblank12]

I won't be able to sleep tonight again, because my tremors are acting up. I am still in aching pain. I don't remember anything. I know I am going to die, from this young. I just want to know when. These doctors act so indifferent to my symptoms, I get they have lives and family too, but I don't got that now. Emotionally damaged and abused child that hasn't left and now unable to take care of myself at 20. It's degenerative at best to describe it, I am so angry they take this easy breezy type of attitude and pretend like I can wait 10 months, I doubt I make it to 3 at this rate. I almost went into another coma in public last 2 weeks ago, and my mom gets angry at me for making a scene on accident. She said, "Oh I understand, we will get you help." but that's all I get. Excuses and false promises, I hope they stop this stupid charades and give it to me straight, I am very intelligent I can rationally distinguish what my symptoms are and aren't when I am physically capable to.I hate how they think, if it doesn't show up in blood tests nor MRI I am fine have a nice day, well screw them. I don't want to be a vegetable again, and die like my grandma did with alzhiemer's I know I obviously don't have dementia nor alzhiemer's but I am surely still grieving from it hard, because how badly they mistreated her body when she was vegetative and couldn't take care of herself. I hope I can make a will that says, if I am vegetative I want specific people to come see me before I pass, I want to die prematurely because I do not want to be on tubes nor oxygen, and have all these family members put all their money into me like they did with my Grandma how she suffered. I will not tolerate it and it will not happen. I am just very angry on this only treatment I am getting, which takes a laxadaisical approach. I have a hard time doing anything, I used to be very active energetic and very healthy, now I can't even move out of my bed, and they say oh you'll be fine come back in 5 months. I don't know, this is ridiculous, if you don't show up on tests they rather not help you wait till you die and expect to be finding answers on an autopsy report, and they might not find anything to begin with. This is a very difficult time for me, and I hate how this is going. I don't know what to do.

[Chemar]

Hi
sorry to hear of what you are going through.

I do think perhaps you may want to post over at our other Community, PsychCentral as members there may be better able to offer support and information. You will need to register again there, but can use the same info you have here
http://forums.psychcentral.com/index.php

[Yismymindblank12]

I am sorry, for being distressed I am not aware, because my symptoms are harming me now. I just mentioned, they cause me the distress. I am not able to take care of myself at all. No one has answers, no doctor, no therapist. I found this forum through the link you gave me. They cannot help me either. I know this seems confusing, but listen I am not feeling well at all. Don't know what to ask my specialists, and I know if they can't get anything. It will be too late, to help, I am not feeling well. I am in a lot of physical pain earlier today, now my body is so numb and relaxed like I can't feel anything, hot things, cold things, any pressure.

I had tests to test pain and other feelings, yeah my body twitched, but I don't know if I am feeling it and somedays I am so numb I can't tell. So when I was at E.R. recently in december they didn't know neither does psych they send me to psych because they don't know, and psych tells me they don't know right off the bad and say too bad. I know you are trying to help and you have no idea, but I am doing well physically getting worse. My tremors, tics, numbness, trouble swallowing or moving, is so bad. If I say one thing that resembles psych i don't get any answers I just get told go to psych. I appreciate the input, but i know I won't get my answers at all.

[Yismymindblank12]

I didn't bother to go through all these symptoms. So far I have an unknown neurological issue. It's affects movement, speech, memory, cognitive senses and behaviors, sensory and it's very painful and difficult. If you are sending me to psych I don't know why you even bother telling me, because I was told to ask on here, before I go see my specialist this tuesday. I have neuro docs that know I do have what I have I've shown and proved it to them. It's not psych please do not misinterpret this. I am desperate for help. I am was almost in a coma recently and I was in a 15 minute stroke coma idk, but I blacked out for a very long time. My vision senses and body function is getting worse much faster. So it's been documented as degenerative from what they are studying. I just don't know what to do.

[Yismymindblank12]

I got my results from the neuro doc for the clinical trials and they said, I am going to be referred to a movement neuro behavioral/psych doctor for Parkinson's disease. They saw my symptoms in person and agree with me I am experiencing something very unusual, but definitely could be parkinson's disease. I am getting worse I am only 20 I am a baby, and I am ailing so badly. So I don't I am very scared though.

[Yismymindblank12]

As an update on here, I am more emotionally depressed now, because I want to be a vocalist, because I already know I can sing well. It gets me mad now that it's extremely difficult to open my mouth to formulate words for singing. I have proper technique, but my medical stuff makes talking difficult and singing impossible. The doctors don't know what I have they are more confused and they know it's definitely nuero in the movement disorder, but it's very different like dementia alzhiemers and parkinson's in one. It's a mix they know that from seeing me and what I shown them and described and so they don't know.

[Yismymindblank12]

I don't remember much at all, I am just barely remembering bout this account and it's purpose my life turned upside down now. I want to recover and need medical attention immediately I don't have a way to contact anyone. I only have a computer. It's very difficult to remember anything I just woke up and now I am scared i don't recall being in this body to begin with.

[Nebulous]

Hi, I think that a good place to start would be to make a simple list of all your symptoms without including any backstory because you are going through so many things that it becomes too much for others to absorb. Keep it simple.

So for example...

Symptoms

-Nausea
-Vivid Hallucinations
-Tourettes

etc...