Undiagnosed and rare conditions
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Life-long mental health issue that progressively gets worse

Matt21Matt21 Member Posts: 3 Listener
Hello. I have been struggling with an undiagnosed mental illness for potentially my whole life. It has progressively worsened and no doctor has been able to help me. Here is a brief outline of my symptoms:


• Indescribable feeling of semi-consciousness.
   o Over the years my description of this has evolved. Originally, I described it as a feeling of being in a fog. Later I started calling it a feeling of being a “zombie”. More recently I described it as being in a dream. Today I call it semi-consciousness.
   o This is my primary symptom. I could learn to cope with anything listed here except for this. I include the other symptoms as a diagnosis tool for this symptom because it is so hard to describe.

• Lack of motivation
   o Consequently poor hygiene

• Attention deficit
   o My mind wanders or goes blank constantly.

• Sub-conscious avoidance of mentally strenuous activities
   o My brain refuses to process school assignments, resulting in poor academic performance. I often sit all day with a textbook or homework assignment in front of me and accomplish as much as most people would accomplish in 15 minutes.

• Sleep abnormalities
   o I have great difficulty going to sleep at a normal time and waking up at a normal time.
   o If I am uninterrupted I sleep for extended periods of time, ranging from 10-14 hours.

• Obsessive-compulsive behaviors
   o I constantly carry out some sort of compulsive behavior, often many at once. I grind my jaw, scratch my head, crack my knuckles, etc.
   o I rarely listen to music, but if I am awake there is constantly a tune playing in my head. I can’t control this.

• Strange phobia(s)
   o I am uncomfortable looking up into the sky. I’m unsure why. This was more severe when I was younger.


I am a 20 year old male currently in college. I have a family history of autoimmune disease and bipolar disorder.
I did not experience any of the aforementioned issues until at least early middle school, and they have progressively gotten worse. 
Does anyone recognize these symptoms or have any idea of what might be ailing me?
I will try to answer questions as soon as I see them.

Replies

  • Francis_theythemFrancis_theythem Member Posts: 110 Pioneering
    Semi-consciousness - have a look at dissociation! There are many types of dissociation, and looking at everything through a fog is one type, derealization is the name of it. MIND has a section on dissociation if you would like to look at it. It's a way of our mind coping when everything is too overwhelming. The good news is, there are techniques to help with dissociation (grounding), but it's also important to know what's causing it.
    Honestly at first glance it makes me think of ADHD. ADHD involves executive dysfunction which makes sleep routines, motivation, keeping on track of things very difficult, routines. Repetitive behaviours are very common too. Might not actually be obsessive-compulsive, but rather a need to fiddle with something a lot because of hyperactivity. The music thing could also be a way of your mind being overactive.
    Obviously I'm not a medical professional and no one here can say what it is. But I'd recommend looking into ADHD and also dissociation. If it is, then there can be medications to help improve things. Oh, and regarding schoolwork, if you have any intrinsic difficulties with processing, coloured backgrounds can sometimes help some people.

  • lisathomas50lisathomas50 Member Posts: 1,520 Pioneering
    2years ago I met someone with symptoms that you are experiencing  it may not be what you have but my friend had a brain scan and there was damage to part of the brain thst was caused by oxygen not reaching thst part of the brain and not sending proper signals telling the parts of the body what to do 

    This caused feeling of not being fully awake my friend had to be woken up otherwise she wouldn't wake up at all she cant live on her own because she would never do anything  but she had to clap 10 times four times a day  you seem to be functioning better than my friend she has lack of  consecration  and can't be left alone she is under a specialist in London I csnt remember the proper name but iits a form of brain disease  she has oxygen in the morning for four hours  and oxygen early evening for 4 hours that helps her to feel awake  and helps concentration  she has more motivation she is 24  it might not be what my friend has but there are similar symptoms 

    Thats all I  can say maybe you should ask for a brain scan unless you have already had one but only a medical professional can help you 

    Maybe you should try speaking to your dr again 
  • Cher_ScopeCher_Scope Community Team Posts: 2,452 Disability Gamechanger
    Hello and welcome @Matt21

    Thank you for telling us about your undiagnosed condition.  That sounds really challenging to live with and I'm sorry you are going through it  :(

    You say that no doctor has been able to help which must be very frustrating.  Have you ever been referred to the hospital for more tests or input from specialist services?  Also, is your GP aware of the impact this is having on your daily life?

    I hope that our members responses have helped, and we will all get our thinking caps on some more.  
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  • Holly35Holly35 Member Posts: 12 Listener
    I have schizoid personality disorder, you sound similar. 
  • janer1967janer1967 Community champion Posts: 6,228 Disability Gamechanger
    Hi and welcome I understand that you are just wanting others to maybe help and recognise your symptoms 

    Unfortunately we are not medical professionals so unable to comment 

    Have you been referred to social services or maybe look at mind charity 
  • lisathomas50lisathomas50 Member Posts: 1,520 Pioneering
    @Holly35 that' was another thought I had there are so many things it could be  an over active thyroid  lupus scitzephrenia bi polar the list is endless if his dr isn't any help he can ask to be reffered to a specialist  which is a better way I think 
  • Tori_ScopeTori_Scope Community Team Posts: 2,764 Disability Gamechanger
    Thanks for sharing this with us @Matt21 :) Have you been able to take a look at the comments above yet? 
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  • Matt21Matt21 Member Posts: 3 Listener
    Thank you for all your helpful input.
    I have come across many of your suggestions before, so it’s good to know we’re on the same page. I didn’t mention it before as to not bias your responses but I have been diagnosed with ADHD, but I strongly believe that my attention issue is a symptom of another underlying cause for a few reasons; because I did not experience ADHD symptoms until my teens, because I have taken several different medications for it without any effect, and because it doesn’t explain the “fog”. In other words I have ADHD but I don’t think that it’s the cause, if you know what I mean. I’ve been rolling with the ADHD diagnosis for 3 years and it’s clear I’m not making any progress, that’s why I’m looking for other potential causes.
    Years ago my GP had me get an MRI, but it didn’t reveal any issues. He also had me get an EEG to rule out epilepsy and because I told him that I thought a scan of my brain activity might give some clues, the EEG was normal but they were only looking for epilepsy and only saw a single wave on their display, it didn’t show activity in specific areas of the brain. He also checked all my “levels”, whatever that means.
    Disassociation is one that keeps coming up, but when I read about it it doesn’t quite sound like me, although I definitely have several symptoms of it. Regardless I’ll bring it up next time I see a doctor.
    I think the best thing to do is for me to see another specialist. You guys pretty much repeated all the things that I’ve suspected might be ailing me, so the best thing to do might be to start ruling them out.
    Sorry for taking a while to respond, this is still a bit of a sensitive subject for me and it can be difficult to get myself to read what people have to say about it.
    Feel free to throw any more questions or ideas at me.
  • lisathomas50lisathomas50 Member Posts: 1,520 Pioneering
    Three of my children have adhd if your medicated ten that explains alot of what your saying my eldest son describe thst type of symptoms  when he started takeing ritalin for adh dont think I have spelt it right  but adhd  does cause those type of symptoms  my children did talking therapy in the end 
  • Tori_ScopeTori_Scope Community Team Posts: 2,764 Disability Gamechanger
    There's no need to apologise @Matt21, don't worry! You can absolutely take your time in reading everyone's responses.

    I'm not saying that you do definitely have ADHD, but I think it's worth bearing in mind that 'brain fog' can be a symptom of ADHD. It's not spoken about as commonly as some of the other symptoms, but I've heard anecdotally that many people experience this. Your GP or a specialist would be best placed to discuss this with you, of course.

    Perhaps your GP was checking to see whether you might have a deficiency? Or a thyroid problem perhaps? Did they explain this to you at the time? 

    I'm sure that disassociation can present quite differently in different people, so I definitely think it's worth mentioning this to your doctor. The best thing you could do would probably to be as honest about your symptoms and experiences with them as you have been here, and try and work together to work out why things haven't improved yet.
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  • lisathomas50lisathomas50 Member Posts: 1,520 Pioneering
    @Tori_Scope he has been diagnosed with adhd  but he is looking for another explanation  but as you said he needs to talk to his dr I have children with adhd  and they had the same sort of symptoms  my children didn't grow out of it either and it's hard to cope with if you go to college or uni then you need medication to help but its finding the right one 
  • Francis_theythemFrancis_theythem Member Posts: 110 Pioneering
    Ah I see. In that circumstance, it does seem there may be another condition. Contrary to lisathomas, I don't see evidence for schizophrenia, at least in what you've said.
    Of course you know yourself best, but it's worth noting Tori is right in that dissociation can present very differently in different people, so it wouldn't be necessary to tick all the boxes. It can occur as a separate disorder or as a response to the mind trying to cope with something else, most notably anxiety or trauma. Or indeed, trauma caused by another condition.  Alternatively, I may wrong in suggesting it altogether - Tori's description of it as brain fog made me think about that too, which is common in many somatic diseases as well. If it began that early, have you been tested for personality disorders?
    Take as much time as you need. It's a difficult thing to do, so don't feel the need to apologise for it.


  • Matt21Matt21 Member Posts: 3 Listener
    @Francis_theythem I first started noticing the "fog" when I was around 10-11 years old, and the inattention/compulsion slowly developed from that point. I describe it as lifelong because I suspect that it could have been developing my whole life but wasn't severe enough to notice until that point, but I could be wrong. I believe that the doctor who diagnosed me with ADHD tested me for personality disorders.
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