Discussions By Condition: I cannot get a diagnosis.

Had a problem for about 5 years. Doctor says im fine.

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: MysteryAnonymous
  • March 31, 2008
  • 00:15 AM

Hi, im a 22 year old male from the UK.

The problems im having might all be linked or may not be i have no idea so i will list them here.

* Bad concentration - I seriously cannot concentrate on anything anymore. And people can sometimes notice when talking to me, its like im listening, but my mind just wanders to think of 'nothing'.

* Bad memory - Lost my 4th bank card this year, I can literally put down a cup, pick up my cigarettes, and then for the life of me not remember where i put the cup.

* Strange / Unrefreshing sleep - Sometimes i can sleep for 12 hours or more, and when i wake up will never feel refreshed like i used to do a couple of years ago. But due to work i can only have around 8 hours sleep now through the week, and it makes it worse. Im also a VERY heavy sleeper. My girlfriend physically shakes me to wake me up.

* On auto pilot 24/7 - This kind of a wierd one, and might be to do with concentration im not sure. But its like im not controlling myself no more, and every now and then ill realise that im actually awake and doing whatever it is im doing. Like when your really tired, mentally not physically, and you dont really know what you are doing. Im like that all day every day.

Ive been to the doctors, he ran some blood tests and said everything was ok. Although the same doctor told my mum she had suffered swelling when infact it was kidney stones after going to hospital about it. He then sent me to the mental health ward where all the doctors nurses said i was fine and didnt need to be there at all.

I dont get physically tired, i would say im quite a fit lad and can run a couple of miles, its in my head where i seem to be struggling. Its been going on now for years and years, about 5, and i decided to live with it and found this forum by chance. It just seems a waste of life as i dont really seem to be living it, like some one else is doing it in my body. As strange as it sounds.

Im also getting ALOT of red rashes on my body, mainly on the top of my legs not sure if this is anything to do with it or not, and chest pains which i had checked out and came back as muscle pains, but i disagree as from going to the gym i know how muscle pains in the chest feel from the morning after a chest workout.

If anyone could give any light on whats wrong with me i would love to hear it.

Thankyou.

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12 Replies:

  • I am not a doctor so this is just my opinion. My niece suffered many of the same symptoms you have and was diagnosed with a form of seizures where basically her brain does not 'sleep'. It was hard to diagnose her because her form is rare. It is called CSWSS.....continuous spike and wave (not sure what the SS stands for) It normally affects children at an early age so I am not saying this is what you have but your symptoms may be a form of siezure. Medications have been a tremendous help for my niece and she functions well in her everyday routine. Maybe you can do a little research online and find a doctor who specializes in seizure related symptoms. Prayers are with you.
    Anonymous 42789 Replies Flag this Response
  • CSWSS stands for Continuous Spike and Wave during Slow Sleep.
    Anonymous 42789 Replies Flag this Response
  • I think you have several conditions that need investigating. First, I wonder if you have sleep apnea. If so, that would explain why you don't wake up refreshed. You could have a virus or something going wrong in your brain, so perhaps, if you can get a doctor to run some test, that might help you.The rash is a clue to this, but could be a second or third condition. Rashes ...ah...so many...talk the doc into doing a scaping and sending it to the lab next time. You might have a virus and that is causing all of your problems. It could be syphlilis...well...could be so maybe you could get a blood test for that. I would throw in a herpes 2 blood test just for the fun of it. It likes to sit on your upper thighs and disappear and then re-appear.I also would like you to get further heart test done to rule out heart disease. Since you are young, they wouldn't think it could be your heart, but if you have a virus, that could be doing some wear and tear on it...I think they should do an entire battery of tests on you, but you have to stand up for it and don't take no for an answer.
    Monsterlove 2921 Replies Flag this Response
  • Thanks for the helpful replies.Would just like to add that i have had a scan on my brain where they placed lots of tiny wires to my head and it came back fine. Also another one where they slided a big computer type tunnel thing over me and it scanned my brain. The doctor has done blood tests but for thyroid problems because he thought that was what was wrong with me. Im going to go back about the rash and ask for more blood tests. Thankyou. I was under the impression it was just my doctor that was very pushy about you being 'fine' and to get on with it. Sounds like its not from this forum. Might change my doctor before the tests. Thankyou.
    MysteryAnonymous 11 Replies Flag this Response
  • I'm just the same but I don't know what it is either. It's gotten worse since I've been ill around 4 months ago and can totally relate to the "losing the cup" part you wrote about, as well as being able to relate to everything else. It's sort of like when someone's talking to you, you're listening, but you're mind is pulling you away from the concentration of it; like you "can't be bothered to listen" even though you're trying to. You want to do stuff, but all you can do is think about it because concentration on the actual project is difficult to maintain. :confused:
    carnivore 23 Replies Flag this Response
  • Thanks for the helpful replies.Would just like to add that i have had a scan on my brain where they placed lots of tiny wires to my head and it came back fine. Also another one where they slided a big computer type tunnel thing over me and it scanned my brain. The doctor has done blood tests but for thyroid problems because he thought that was what was wrong with me. Im going to go back about the rash and ask for more blood tests. Thankyou. I was under the impression it was just my doctor that was very pushy about you being 'fine' and to get on with it. Sounds like its not from this forum. Might change my doctor before the tests. Thankyou.the tunnel thing is a CT scanner I think ;)maybe the rash is just a sweat rash, unless you've got other sypmtoms, it shouldn't be anything to worry about. Good luck with your diagnosis.
    carnivore 23 Replies Flag this Response
  • Hi there, its nice to know im not alone, although i also wouldnt wish it on my worse nightmare, so its swings and roundabouts.Yes it was a CT scan i had. Have you had similar tests done? What does your doctor think?Hope you can help yourself, because i know how bad it feels.
    MysteryAnonymous 11 Replies Flag this Response
  • I also have the same symptoms going on 5 months now and under the care of a team of Neurologist - the best there is and they are stumped. I found another women in Canada with the same symptoms going on five years.
    Anonymous 42789 Replies Flag this Response
  • Hi there, its nice to know im not alone, although i also wouldnt wish it on my worse nightmare, so its swings and roundabouts.Yes it was a CT scan i had. Have you had similar tests done? What does your doctor think?Hope you can help yourself, because i know how bad it feels.nope not had a CT scan but i wish they would give me one because i've got a whole other bunch of symptoms other than just being run down, lack of concentration and forgetting things. have you ever found caffine or food high in calories that helps? doesn't with me, infact caffine and sugar based foods etc make me feel even more tierd. have you read up on fatigue? might be worth it you know cos it sounds most related to the above symptoms.good luck finding o ut the problem! :)
    carnivore 23 Replies Flag this Response
  • I think i may have found an answer. I just done the questionairre on this website: http://www.ei-resource.org/illness-information/related-conditions/electrical-sensitivity-&-hypersensitivity/and from my answers its on the high scale of having EHS.Nearly every question i read i was thinking 'god thats exactly whats its like with me'.I dont really know much about what it is yet, but im going to be doing research into it. Maybe if i stop using the computer it will go away. I spend alot of hours infront of the pc monitor. But i would never use one again in my life if i knew it would make me think straight and live a normal life.
    MysteryAnonymous 11 Replies Flag this Response
  • O would also like to ask if any one can point out what i could do about finding out if i do have this EHS. i am convinvced now but am struggling to find much information on google. I have read through a lot of the symptoms, but cannot find out what i should do about it.thankyou.if i get cured i am going to be the happiest man in the world i gave up on the idea of it being diagnosed.
    MysteryAnonymous 11 Replies Flag this Response
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  • http://www.ei-resource.org/laboratory-tests/Don't know if you saw this but this link is from the previous link you refered to. On the left hand side was listed 'useful lab tests'. It doesn't look like there are many doctors that deal specifically with this problem. It appears you need to prove to them such a thing even exists. Don't give up. Start with finding a doctor who is willing to do some of the basic tests suggested. There seem to be a few people familiar with this problem from viewing all the posts and they may be able to offer suggestions on where to look for more information.
    Anonymous 42789 Replies Flag this Response
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