Discussions By Condition: I cannot get a diagnosis.

Fatigue, confusion etc.

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Didrikk
  • August 18, 2010
  • 10:23 AM

Hey guys,
I have been going through doctors for about a year now and had seemingly everything checked out they could think of so far (blood work, main allergies, EEG, MRI, polysomnography etc), but no real answer has come up yet.

These problems have been persistent since around I was 13 but until one year ago nobody seemed to take it seriously so we only got into diagnosing it since last autumn. I'll try to make an as clear as possible summary of symptoms, if anyone can come up with new ideas and opinions it would be greatly appreciated!


-(mental) fatigue and concentration problems
These are the main ones, but since they can mean about anything that's wrong with your body, that's the reason the diagnostic process seems to have gone astray that much.
They create pretty much ADD-like effects, like I can never remember appointments, at work or uni I'm just looking around since I can't focus on people talking, especially when in social groups bigger than 3, and eventho I don't fall asleep sometimes it feels like it, as there are many episodes of low brain arousal so it feels all the time like I have 5-10 minute "holes" in my experience of time, that I can't remember what's been going on eventho I have kept talking or doing stuff (on auto-pilot?).
This also creates confusion in time, and often I feel detached from stuff that only just happened the same morning etc, as if anything that's more than 5 minutes ago has been ages ago, and anything in the future I can't even focus at all about.

So while I emotionally only exist in the very present (5-10 min before and after the current moment); I still feel like I am actually not present ever even at that very moment.

I can super-concentrate on things that completely suck me in, for hours and days but it still feels like a dream somehow. It's either this or I can't focus on the other stuff at all. Same with talking, once I start talking it feels like I can keep talking or writing for hours non-stop, or other moments I just cant have a normal conversation with people cuz no words pop into my brain.


-energy dips
I know I have generally low blood pressure, but the doctors never connected this to my concentration problems. Otherwise, this might also be a problem with sugar/energy delivery to the brain?

The more physically active I am, the less my brain seems to function properly; I am most mentally absent during the day from about 20-30 minutes in the gym, and once I finish my workout I usually have to walk home in a delirious state and either pass out on my bed or at least feel like I have to. When I was still in high school, after PE class I would be delirious and have blurred vision for about a half hour, but the vision blurredness seems to have gone mostly.

Other energy dips usually occur after eating, especially in the morning. If I shower and breakfast too soon after I wake up, I have to go to bed again cuz I just feel like passing out or sleeping again.



I have had other stuff that are not the main problem, but since they might be related to the cause of this I should mention them shortly anyway; I haven't connected them to this before so I never told my docs, but maybe adding them in might give a better overview even if maybe only 1 or 2 are related.

-excessive thirst eventho I drink at least about a 1.5 l bottle of water/day (apart from getting water from juice, soup, fruits, food etc), I am usually thirsty all the time. I could just keep drinking non stop the whole day if I wouldnt know that's really bad for you
-pee a lot my flatmate even jokes that I spend my whole life on the toilet lol. but I usually go to the toilet about 10 times a day, and 2-3 times at night (at least Wiki says average would be 5 during the day and 1 at night)
-itchy I have always been very itchy everywhere, always have to scratch a bit here or there on random places. And my right upper eyelid always feels like it's sticking to my eye a bit and I can never fully upen it without having to lift it with my finger all the time.
-hot, like I feel always very warm so I never wear jackets or Im sweating to ***l, walk around in Tshirt in winter etc. Warm summer days make my dizziness/concentration problems even worse than usual.
-dry eyes, even if I don't wear my contacts for a week, doesn't make a difference anyway.



That's all I could think of now, hope any of this makes sense, and any ideas would be helpful even if I need to see a doc to confirm these, at least I know which docs I should be making appointments with next cuz I can't just keep looking around randomly anymore!

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10 Replies:

  • No-one? :p even if you think your idea sounds stupid or far-fetched I'm interessed!
    Didrikk 4 Replies
    • August 19, 2010
    • 08:16 AM
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  • Hi Didrikk,Sorry to hear of all your troubles! In reading your post, I have a few questions....What's your age, weight and gender?Do you know what blood work has been run and if it's all been 'normal'? Have the issues become worse or remained the same degree over the time you have experienced them? Any specifics would help us help you.At first blush, your symptoms seem to describe some sort of blood-sugar issue (such as diabetes)....but that's a lot of tests and I would think that would have been checked. However, sometimes they don't do a fasting blood-sugar test, just a regular one, and that can make a difference. Also, it may not be full-blown diabetes-type stuff going on but more of an insulin resistance. A glucose tolerance test could determine this if you haven't had it already. And my right upper eyelid always feels like it's sticking to my eye a bit and I can never fully upen it without having to lift it with my finger all the time. Does your eye actually droop? Does it just 'feel' like you have to open it or do you have to push it open? I ask because if it is a form of ptosis or drooping eyelid, diabetes can be a cause of that. It stood out to me among your symptoms. What you are describing is pretty classic of diabetes........but with all those expensive tests (blood work, main allergies, EEG, MRI, polysomnography) if that was it.....I dunno; it should have been found. Have they thought about something like Attention Deficit Disorder? It would account for the cognitive issues if not the physical ones. Another thought might be that as all this began around your 13th year.....have your hormones been tested? I don't know your gender, but especially if you are female (really males too, but women seem to have more of an issue with this), hormone issues can cause many of your described symptoms and that would fit with the time frame AND it something not commonly tested for in routine blood work. Hmmmmmm.......A final thought for you might be that if these issues have been going on since you were 13yrs old and none of the test are finding anything......instead of continuing to search for something 'wrong', sometimes cognitive games and meditation-type training can help. I know I've had to really work hard to maintain my memory especially! It's possible all of this is perfectly 'normal' for you, as we are all individual, and it may just be about finding creative ways to cope/function with your particular issues. I'm not trying to belittle your plight (please don't take this idea wrong!)......just.....we're really complex beings, humans. Not everything works perfectly all the time, but that doesn't necessarily mean there is something 'wrong'. Just tossing out ideas. The more info you provide the better people here can help. Best of luck to you. :)
    Harmonium 322 Replies
    • August 19, 2010
    • 01:09 PM
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  • Hi Didrikk,Hey man! (/woman?) Thanks for your indepth reply. What's your age, weight and gender?I'm a guy, 23yo and around 155lbs (70kg), altho I was around 185 (85kg) one year ago, before going to a healthy lifestyle which was the first solution I tried to solve this with (as everyone always said it was cuz I ate too much cheese or partied too much and all that kinda bullcrap.)Do you know what blood work has been run and if it's all been 'normal'? Nothing came out that would explain this, at least according to my docs. Never got into details of all this, especially as they said there was no reason to; so I dont know more specifics, but I think they checked vitamins, minerals etc and these looked 'healthy/normal' according to them eventho I'm a vegetarian. Have the issues become worse or remained the same degree over the time you have experienced them? It fluctuates, but so far it's been impossible for me to determine exactly how and when they fluctuate; also because the memory is very flawed :) especially about how I felt 2-3 or even 8 years ago. Over the last 6 months, due to too much worrying about all this and going from doctor to doctor it got a lot worse as I ended up in a depression, but that seems to be gone now so I'm back to my old 'self'. I'm currently trying some different 'diet styles' to see how that affects me, like currently on a non-dairy, next week I'll stop eating gluten eventho they didnt see any lactose or gluten allergy in my blood. And just see how that affects my general feeling. At first blush, your symptoms seem to describe some sort of blood-sugar issue (such as diabetes)....but that's a lot of tests and I would think that would have been checked. However, sometimes they don't do a fasting blood-sugar test, just a regular one, and that can make a difference. Also, it may not be full-blown diabetes-type stuff going on but more of an insulin resistance. A glucose tolerance test could determine this if you haven't had it already. Thanks for that, I was already thinking about this next time I go back 'home' for the next round of tests (as I'm studying abroad currently), and I didn't have a blood-sugar test altho I had the opposite; to test my adrenal function or so, and cortisol. (I think they induced a hypo by giving a shot of insulin while fasted, to see the cortisol response) Not sure tho if this excludes any other insulin/sugar problems, as that wasn't the thing we were looking after at that point. Does your eye actually droop? Does it just 'feel' like you have to open it or do you have to push it open? I ask because if it is a form of ptosis or drooping eyelid, diabetes can be a cause of that. It stood out to me among your symptoms. Hard to say, as it's purely based on my own feeling and not on someone noticing it does. It's just a bit (millimeter) or so, I tend to open it with my fingers just to get the "sticking to my eye" sensation away for a while until it comes back. Have they thought about something like Attention Deficit Disorder? It would account for the cognitive issues if not the physical ones. I know :) I convinced the psychiatrist who supervised the polysomno to let me do a neuropsychological test next time I'm there this fall, with the idea of ADD. Reason why I'm not completely happy with that Dx tho, is that it's something not fixable + they don't exactly understand the mechanisms and causes of ADD yet, and according to some theories it might be rather a symptom of something else (f.ex. sugar based, food preservatives) than be an actual diagnosis. These might just be conspiracy theories but there's no reason to go through life being happy with my final ADD diagnosis, if actually it could easily be fixed by a certain diet or insulin or whatever. Another thought might be that as all this began around your 13th year.....have your hormones been tested? I don't know your gender, but especially if you are female (really males too, but women seem to have more of an issue with this), hormone issues can cause many of your described symptoms and that would fit with the time frame AND it something not commonly tested for in routine blood work. Hmmmmmm.......Only things I know are Cortisol and Testosterone which were within normal range. A final thought for you might be that if these issues have been going on since you were 13yrs old and none of the test are finding anything......instead of continuing to search for something 'wrong', sometimes cognitive games and meditation-type training can help. I know I've had to really work hard to maintain my memory especially! It's possible all of this is perfectly 'normal' for you, as we are all individual, and it may just be about finding creative ways to cope/function with your particular issues. I'm not trying to belittle your plight (please don't take this idea wrong!)......just.....we're really complex beings, humans. Not everything works perfectly all the time, but that doesn't necessarily mean there is something 'wrong'. I know this, and I am already starting these things; also cuz they are helpful even with a different diagnosis like sugar just cuz they're useful in life. I am now trying to live a life that copes as much with the symptoms as possible, but while doing that, I still think it's silly to just accept, before you're sure there's nothing you could actually do about it. If life's manageable this way with meditation etc, it would be even a 100x more manageable being clear in my head and energetic, and doing the same meditation. And I just need to get an answer, even if it's an "unfixable" answer ;) part of forming your identity etc, you know ;) Thanks for all the input tho!
    Didrikk 4 Replies
    • August 19, 2010
    • 01:46 PM
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  • HiI wonder if it could be a problem with your mitochondria.As these are referred to as the power houses of the cells, it could explain a lot of your problems.Mitochondria and their problems are quite a new field and may not have been tested for and certainly would not have been conciderd when you were thirteen.Best wishes
    chrismia 159 Replies
    • August 19, 2010
    • 04:16 PM
    • 0
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  • HiI wonder if it could be a problem with your mitochondria.As these are referred to as the power houses of the cells, it could explain a lot of your problems.Mitochondria and their problems are quite a new field and may not have been tested for and certainly would not have been conciderd when you were thirteen.Best wishesThat's an interesting approach! Thanks; curious if anything will come out of that. Also, when I was a teenager actually my GP just said it was all in my head, after just taking some blood and checking for iron and magnesium which turned out to be OK; and she kept saying this until my 22nd when I decided to ignore her and push things to a next level myself cuz finally I had the self confidence needed to say, that I had the right to not be tired my whole life lol so not to listen to this stupid woman. Anyway, so even if research in mitochondria had already been this far 10y ago, I'd never have found out cuz I never even got past my GP to get better tests lol :) Thanks again!EDIT: Also, Harmonium, I responded to your msg earlier, but somehow that message said it needed approval from a moderator before being displayed, whereas this one posted automatically; so I suppose my response to you will show up later :)
    Didrikk 4 Replies
    • August 19, 2010
    • 04:28 PM
    • 0
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  • Has any body mentioned Sjorgren's Sydrome to you. I have had similiar symptoms and this was something that was checked for? Hey guys, I have been going through doctors for about a year now and had seemingly everything checked out they could think of so far (blood work, main allergies, EEG, MRI, polysomnography etc), but no real answer has come up yet. These problems have been persistent since around I was 13 but until one year ago nobody seemed to take it seriously so we only got into diagnosing it since last autumn. I'll try to make an as clear as possible summary of symptoms, if anyone can come up with new ideas and opinions it would be greatly appreciated! -(mental) fatigue and concentration problemsThese are the main ones, but since they can mean about anything that's wrong with your body, that's the reason the diagnostic process seems to have gone astray that much. They create pretty much ADD-like effects, like I can never remember appointments, at work or uni I'm just looking around since I can't focus on people talking, especially when in social groups bigger than 3, and eventho I don't fall asleep sometimes it feels like it, as there are many episodes of low brain arousal so it feels all the time like I have 5-10 minute "holes" in my experience of time, that I can't remember what's been going on eventho I have kept talking or doing stuff (on auto-pilot?). This also creates confusion in time, and often I feel detached from stuff that only just happened the same morning etc, as if anything that's more than 5 minutes ago has been ages ago, and anything in the future I can't even focus at all about. So while I emotionally only exist in the very present (5-10 min before and after the current moment); I still feel like I am actually not present ever even at that very moment. I can super-concentrate on things that completely suck me in, for hours and days but it still feels like a dream somehow. It's either this or I can't focus on the other stuff at all. Same with talking, once I start talking it feels like I can keep talking or writing for hours non-stop, or other moments I just cant have a normal conversation with people cuz no words pop into my brain. -energy dipsI know I have generally low blood pressure, but the doctors never connected this to my concentration problems. Otherwise, this might also be a problem with sugar/energy delivery to the brain? The more physically active I am, the less my brain seems to function properly; I am most mentally absent during the day from about 20-30 minutes in the gym, and once I finish my workout I usually have to walk home in a delirious state and either pass out on my bed or at least feel like I have to. When I was still in high school, after PE class I would be delirious and have blurred vision for about a half hour, but the vision blurredness seems to have gone mostly. Other energy dips usually occur after eating, especially in the morning. If I shower and breakfast too soon after I wake up, I have to go to bed again cuz I just feel like passing out or sleeping again. I have had other stuff that are not the main problem, but since they might be related to the cause of this I should mention them shortly anyway; I haven't connected them to this before so I never told my docs, but maybe adding them in might give a better overview even if maybe only 1 or 2 are related. -excessive thirst eventho I drink at least about a 1.5 l bottle of water/day (apart from getting water from juice, soup, fruits, food etc), I am usually thirsty all the time. I could just keep drinking non stop the whole day if I wouldnt know that's really bad for you-pee a lot my flatmate even jokes that I spend my whole life on the toilet lol. but I usually go to the toilet about 10 times a day, and 2-3 times at night (at least Wiki says average would be 5 during the day and 1 at night)-itchy I have always been very itchy everywhere, always have to scratch a bit here or there on random places. And my right upper eyelid always feels like it's sticking to my eye a bit and I can never fully upen it without having to lift it with my finger all the time. -hot, like I feel always very warm so I never wear jackets or Im sweating to ***l, walk around in Tshirt in winter etc. Warm summer days make my dizziness/concentration problems even worse than usual. -dry eyes, even if I don't wear my contacts for a week, doesn't make a difference anyway. That's all I could think of now, hope any of this makes sense, and any ideas would be helpful even if I need to see a doc to confirm these, at least I know which docs I should be making appointments with next cuz I can't just keep looking around randomly anymore!
    jinjess 2 Replies
    • August 19, 2010
    • 08:47 PM
    • 0
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  • Your symptoms and story sound very similiar to my husband that has gone undiagnosed as well. His issues started when he was 15 years old and he is currently 26 years old/170 lbs/5foot11 inches and still having problems. He has been through sleep studies, seizure/epilepsy testing/thyroid tests/MRI/CAT scan/liver function tests/sugar level testing, colonoscopy, ..etc.His symptoms are:-when he becomes either stressed, over tired, or emotional he starts to go into a spell (confusion) where he doesn't comprehend what any one is saying. His eyes droop and he gets very sleepy. He needs to lay down soon after and will sleep 12 hours and wake up looking like he has had only 3 hours of sleep.-sweet breath- almost smells like alcohol. When he drinks it intensifies his confusion and illness and it seems like he has been drinking a case of beer instead of 1 beer.-constipated/IBS- he will spend upwards of 2 hours in the bathroom sometimes and his illness will start to come on if he is having BM issues.-Too hot- He is the same way as you. Constantly too hot- needs to keep the thermostat set super low and excessively complains about heat. Never wears a jacket and has clammy skin. This can begin to make him really sick too.One time he was so sick that I took him to the ER. He had about 3 beers and had a stressful event occur and he was registering over 2.0 blood alcohol level. He could have died that night and the entire hospital staff just thought he was a raging alcoholic. We hardly drink and it just proves that whatever is affecting him is bigger than the majority of GPs.I know this is lengthy but I felt compelled to write because your story is so similiar to ours. After spending 1000's of dollars and every test and procedure has been done we are at a loss.We have thought for the longest time it is hypoglycemia but he seems to be fine with not needing to eat constant meals.
    Anonymous 42789 Replies
    • August 20, 2010
    • 05:08 AM
    • 0
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  • Sorry for the very quick note earlier. I am at 43 just learning that it is time to take my health into my own hands. I will not get into ALL I have been thru,but I have actually made a chart dating back almost 30 yrs. of various issues over the years since I was a teenager. This chart lists the issue,the dates,doctor and meds. It will be going with me to the appt. I am making with an internist. My current diagnosis is Lupus(SLE),but I am still not positive that this is correct. While I do agree that it seems to be autoimmune in nature,just not sure that it is that. There are alot of sites on the web that you can get a list of the autoimmune diseases(both proven and suspected). You would be amazed by what qualifies as autoimmune. Mine started at 15 with a case of full blown influenza followed by Thyroiditis and now we sit with Lupus as the diagnosis. Looking at one of these lists made me aware of many illnesses or issues I have had over the years that fall into that category,it quite honestly made me think alot. This most current set of issues started in 2006 after a hysterectomy and I have at this time been treated by a Nurse Practitioner,a urologist,a rheumatologist,a dermatologist and a gastroenterologist. They all treat the seperate issue,but do not seem to look at them as one and the same. Many of my problems do mimic your own. Do some research on the web,make a timeline from as far back as you can remember and start new. If you need any links let me know and I will copy and paste some of mine. Believe it or not Wikipedia is a good place to start and find links. Good luck,keep me posted.
    jinjess 2 Replies
    • August 20, 2010
    • 05:55 AM
    • 0
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  • Im going to suggest Postural Orthostatic Tachycardia Sydrome (POTS) by your symptoms Im sure this is at least part, maybe all of your issue. it can cause mental confusion Other energy dips usually occur after eating, especially in the morning. If I shower and breakfast too soon after I wake up, I have to go to bed again cuz I just feel like passing out or sleeping again. POTS can be triggered by eatting.. as the blood moves to the digestive system and less goes to the brain. Showering will trigger POTS due to the warm water making the blood vessels in body dilate and blood come to surface more (taking blood away from the brain). Also the act of standing is bad for POTS patients. POTS improves on laying down... hot, like I feel always very warm so I never wear jackets or Im sweating to ***l, walk around in Tshirt in winter etc. Warm summer days make my dizziness/concentration problems even worse than usual. That's another POTS thing.. warmth isnt good for POTS (due to the same thing as how showering triggers its symptoms to come in more). POTS in many will cause thirst (one of the causes of POTS can be low blood volume.. that is something doctors dont test) ..and with the increased thirst.. will come lots of peeing. Low BP is very common in POTS. Ive got POTS and i drink between 4-7 Litres PER day, if on my feet and being active.. if i drink less.. i get bad symptoms (including complete passing out). note.. if one drinks that much you need to drink electrolite drinks or sports drinks.. so you dont end up low on sodium throu drinking too much water. Increasing fluid intake along with increasing salt, is one of the treatments for POTS .. you need to start drinking a lot more. Avoiding showering and eatting close together (so you dont have two POTS triggers happening at once to make things even worst) etc etc............http://www.dinet.org/symptoms.htm
    taniaaust1 2267 Replies
    • August 21, 2010
    • 03:01 PM
    • 0
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  • Hey guys, thanks for all the replies! I figured I would post the 'final'(?) diagnosis I just got, in case it might help somebody in the future. In the light of Chronic Fatigue Syndrome as an immune disease and associated with gut dysbiosis (so called 'leaky gut') I got tested for a wide variety of possible causes of CFS by renowned belgian dr De Meirleir; and today we reviewed which tests came up positive. Apart from gut leakage into the rest of the system, came up a parasite Blastocystis infection that probably was the cause of my immune deregulation. This combined also caused immune reactions on various foods such as eggs, milk, soy, gluten etc altho these allergies are secondary and rather caused by the desintegrated immune system/gut but still obviously causing more symptoms and symptoms. Anyway, that was it for now :) DD
    Didrikk 4 Replies
    • December 14, 2010
    • 08:53 PM
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