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35 Year rare malfuntion of the brain many extreme shut down of brain

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james76927
james76927

I joined this forum in hopes I could connect with others for hope.  Short story, at age 20 started getting periods where my brain could not focus scattered, out of it.  Loss of sensations to external world.  Made Engineering school very hard sometimes.  1985 age 23 out of school working now things got worse fast.

Full brain shut down.   Desperate I saw physiatrists.  Many drug experiments hospitals pushed my decline to super depths.   Drugs made it impossible to function.  Thoughts of ending it were big.

24 Years old stopped all the drug experiments crawled back to work.  1-2 Years later improved 25%, enough to function.  Still confusion with all sensations.  Brain was bombarded with this disease all the time.   Felt like some rare metabolite, vascular and autoimmune condition rolled up into one disease.      All senses shaky scattered, focusing a huge effort.   Numb brain function, little sensation entered my brain.    Some fluctuations but the condition always there.  

 

Still for 23 years I worked as a mechanical engineer.  Started a computer animation

company traveled hiked got married had two girls.   Fed up I just wanted to see the world as my family did.    Then told my problem to Neurologists and many other doctors.   All of them brushed me aside, or were stumped or pushes drugs on me.   All drugs magnified my problems exponentially!

2008 Things got real bad a repeat of 1985 but many times worse.   Many hospitals and drugs I really started thinking about ending it.  I was screaming on a daily basis.  A Nightmare!

Knowing I had a one of a kind condition I pushed Neurologists and other doctors to try and start some

tests.   Then some positive test results; Oligoclonal bands, Brain scans showing perfusion of the brain, cerebral angiogram indication of vasculitis, findings of small infarcts in the frontal lobe, indications of lupus and blood clotting.    However treatments we not helping.  

Whet to MAYO Clinic twice.  Saw Dr. Orhun Kantarci Neurologist. 

Conclusion:  Horrible Sleep apnea!   Got a CPAP.  Zero help!  Frustrated I had major throat, tongue, uvula and nasal surgery.   Result: zero sleep apnea!   1 Year later feel I have only a short time to live.  Or I just want it to end.   It is something but what?

0 likes, 12 replies

12 Replies

  • coral2786
    coral2786 james76927

    Posted

    Sounds like u have at a horrendous time dealing with all this. I have had a MRI scan recently which has shown abnormal changes in the frontal lobes. The symptoms i have are dizziness, legs giving way, electric shock feelings in my finger tips, Bad headaches, numbness and burning sensation in my calfs. I am seeing a neuro surgeon on monday. I was speaking to a nurse i know and i said why cant i see a neurologist in my town where i live and she said you have to see a neuro surgeon i said whats the difference. Which is a nuerologist treats disorders of the nerves and brain and a neuro surgeon operates on the brain and tumours.

    Is there not a surgical option for you?

    • james76927
      james76927 coral2786

      Posted

      Thanks coral I felt we had a few things in common.   My headaches can get bad some times, dizziness can't walk right most times peole don't know.  I miss hiking.  I had a blind brain biosy in 2012 for Vasculitus but

      it had a large chance of negative results.. I just keep on trying.  It seems fuitial to me sometimes but I have two kids.  Wonder what your Nuerosurgeon is going to do??

    • coral2786
      coral2786 james76927

      Posted

      I also have a son so i understand where you are coming from. I have no idea what he is going 2 say and to say i have had 14 operations in total on other parts of my body and never been scared this appointment i am worried about it but i will go to the appointment and deal with whatever he has to say i have to and as they say things can only get better
  • sara6789
    sara6789 james76927

    Posted

    Hi, I'm sorry you've had a hard time of it but maybe you are like me and it's not just one condition but a few. I know that sounds like an obvious/ stupid thing to say but I can't be the only one out there with all the bad luck smile I will give you a quick run down of what I mean (I do have different symptoms as you but I hope you get my meaning) at about 17 I became really depressed. To the point I couldn't function. It got so bad I tried to take my own life, then two years later right as rain, better in fact. No treatment. This went on for a few years until I was diagnosed with bipolar. Fair enough seems pretty obvious looking back. Anyway about two years ago I started developing other symptoms. Total disorientation brain shutting down not being able to talk, feeling I was out of my body and had no control then I started to become quite delusional convinced that I was going rotten, it got so bad I ended up in hospital after cutting the skin off my arm, I was so convinced I was going to be rotten. Anyway long story short I was then also diagnosed with schitzophrenia makuny me not bipolar but a mixture of the two, schitzoaffective disorder. 6 months after I got pretty sick I lost sensation I half my body walking became pretty difficult I was exhausted all the time. Anyhow I went to the docs and after repetedly being told I was fine and not sick I was sent for mri and then called back pretty pronto as I have a mass in my spinal cord that has then caused me to develop something called syringomyelia which is basically a void in my spinal canal that has eaten away at my nerves. I am just waiting to find out if the mass is cancer but no one can give me an awnser yet. Anyway what I'm trying to get at is they have basically found 4 chronic illnesses causing a very worrieing array of symptoms. Iv had everything from catatonia to delusions to partial paralysis. No wonder non of the docs cold work out what was ring with me. I'm 29 by the way and this (apart from bipolar) has all happened in about two years.but just goes to show I was kinda right, my main delusion being I was rotten and so I am at my core, got to laugh really. I feel like I'm the only one going threw all this.
    • james76927
      james76927 sara6789

      Posted

      Sara I feel for you I am surprised that people are resonding to what I say.   I retate to the saying I am going rotten.   I feel something like that like I am decaying and my brain is disolving.   I so want to be normal. I also know like you that something is wrong.  I guess a void in spinal canal that has eaten away at my nerves would drive anyone bonkers thats the problem.  Sometimes I think I have raibies,  I know I don't but I have screamed so many times that some times at night all that enters my head are my million screams.    But the next day I am still alive and most people can't fathom my existence.    Yikes I like telling people on this forum more how I feel then my therapist that I sometimes see.   I am drinking a diet coke now which helps me for

      a few mins them it starts to scamble my nervous and vascular system.   So diet coke is one of my main theraputic drugs kind of sad.  Hope things work out for you sara.  You sound logical.

    • sara6789
      sara6789 james76927

      Posted

      Putting on a normal face is the easy part getting threw days are easy physical pain is easy too. Nothing in the world compares to mental pain, I'm in bed but yet again I can't sleep. I suppose that's to be expected with so much going on but iv always had a problem with the night time. It's like all the million thoughts and doubts eat away at your brain. I get what you mean about the screams I get something like that but with blood every time I close my eyes it's all I can see a thousand times over in every way possible, blood. I never had an easy life and every time I get on my feet for just a moment I get nicked back down again. I get tierd of putting on a brave face but sometimes it's all that keeps me going.
    • james76927
      james76927 sara6789

      Posted

      I would like know more about how you get along.   I hope I can spurr you on to better times.    I need spurring.   
    • sara6789
      sara6789 james76927

      Posted

      I'd be happy to help, if I can. Truth is im not really sure. I think it's just a survival thing, iv been alone most of my life I don't have a family I speak to and only very few close friends. I grew up learning to hide everything so I didn't get into trouble. I was left to bring my self up from a young age and I was terrified of being found out and put into care so I developed this mask if you will. As long as you are clean and you smile no one looks to close. Trouble is it becomes very hard to break and it becomes quite distructive. Asking for help was such new thing for me probably the hardest thing I ever did, admitting I was not ok. But even now I'm stubborn as hell. I won't let people see me cry. My answer is always I'm ok. Half the time I convince myself that it's true until I get sick again. I thing it's important to open up and talk to people. I can't do it face to face but for some reason writing it down is easier even if no one sees it. I have a big book that I scribble and rite all the crazy things that run threw my head some pages are the same few words over and over. Some are story's some are my past some are fears and feelings. But for me putting it all down in there then shutting the pages and walking away make it easier to deal with things. It's like I'm not carryING it around all the time. It doesn't always work I have bad days too but who doesn't smile I'm lucky I think because before I got really sick I ran away, traveled the world. Iv lived in 5 country's and had so many adventures and met so many people that if I hadn't Had my life I never would have done. I'm to stubborn to let this beat me smile how do you deal with things? I'm very interested. Before I got sick I actually wanted to be a psychologist to study abnormal brain disorders, life's ironic lol
    • james76927
      james76927 sara6789

      Posted

      I hear how you cope.   I do some of the same things.  I will walk down the halls at work and feel horrible but then walk in to an office to do work andI force a smile and deal with it.  Many many times I just leave work and drive I can't deal with it.  Today I take my 10 year old daugther to the school bus for a class trip.  I did sleep last night but I have a head ache.  I now write hear like some one is listening a distraction but some hope..Today I plan on going into a hyperbaric chamber.  Not sure if it has ever really helped buy It has helped so many others repair their brain.    I am lucky to have the Job I have I can do this..  Jim
    • sara6789
      sara6789 james76927

      Posted

      I'm very upset today. I went to council to ask for some help and after much passing around they have decided I'm not eligible for financial help. I supposed to live off £88 pond a week. Well that doesn't even cover rent or council tax or bill or food or anything. I can't work as I can barley use my legs. But apparently. There solution, move house. Like that's going to help. Like I have the energy of finances to do that. I'm in the minus I have no savings and nothing coming in I live at my place of work but am unable to work so my position here is not certain. Sometimes I just want life to cut me a break. Sorry for ranting but I'm angry.
    • james76927
      james76927

      Posted

      Got some of my blood test back shows mild inflamation

      MCM-LOW

      RDW-HIGH

      PLATLETS- HIGH

      HAD A 2 HOUR SPINAL MRI TODAY HOT MAGNETS.

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