Discussions By Condition: I cannot get a diagnosis.

Fatigue, concentration, memory, logic issues - Ideas PLEASE??

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: esquamulose
  • May 8, 2010
  • 04:02 PM

Hi. I'm at the point where I'm unable to work because of my problems - I'm on disability based on my psychiatrist's diagnosis of ADD and depression, but I'm pretty sure this is not actually a psychological problem, and am DESPERATE to figure out what's really wrong with me.

Symptoms: Exhaustion, fatigue - mental and physical exhaustion. Inability to concentrate - I lose track of something as simple as a kids' cartoon - difficulty putting steps of a process together, trouble remembering things even a second after I've seen them. There are good days and there are bad days, but even on the good days I'm not "well" and on the bad days I'm entirely nonfunctional. There are other issues like dizziness and vertigo, but these are the main components. The problem started slowly, ramped up slowly over a period of about five years, from inconvenient to crippling - and around November, December, ramped up SHARPLY, and has remained bad ever since.

Here's the good part. I have had Graves disease, had my thyroid removed, then radiation treatment, am on Synthroid - and all of this happened around the time that the fatigue/concentration problems first began - and they're CLASSIC thyroid symptoms, yet both my regular endo and the guy I saw for a second opinion swear that my numbers are normal. My regular endo has also done a bunch of blood tests for things like pituitary function, and I don't know numbers but he's said those are fine too. The other thing that happened around the same time was a diagnosis of bipolar syndrome (probably aggravated by the Graves) and going on Depakote to treat it - and seriously, the drug saved my LIFE, but I'm wondering if it's had some long-term effect on me other than the 100 lbs I gained in the first seven months of taking it. I've found some interesting references on Depakote and thyroid disease, but nothing specific to my situation.

The second-opinion endo recommended that I see a neurologist in case I'm suffering from some kind of early dementia - and I will; but add into the mix that I had a head injury some fifteen years ago that caused excruciating headaches and messed with my reading and language skills for about five years without EVER producing any sort of abnormal MRI or test result. I don't know whether this has anything to do with it or not. (Oddly enough, at the moment my reading and language skills are LEAST affected by the concentration/memory problems.) There is no change in medication, no significant event that I've been able to find, that ties in to the sudden escalation of symptoms last winter.

I've also got other stuff going on, like COPD, "pre-diabetes", etc, but again, none of it accounts for the symptoms I'm having or the severity of them. I've been tested for Lyme and a bunch of other fatigue-type stuff by my GP - he said something about my having been exposed to Lyme but not being active, I'm not sure what that means but he wasn't concerned about it - but while I love my GP, he is not any sort of expert in this sort of thing. I have friends with fibro and CFS, and my symptoms don't quite line up with their experiences, though I guess it's not out of the question...

And I'm getting to the point where I not only can't work, I'm beginning to get worried about my ongoing ability to live independently - having trouble keeping up with household stuff, getting groceries, things like remembering whether the stove's on - and there's no one else who can look after me - plus, my disability only provides limited coverage for "psychiatric" illnesses, so if I can't find a doctor who can at least diagnose what's ACTUALLY wrong with me (if not fix it) I could well end up homeless in short order - so the situation is pretty desperate.

So at this point I'm looking for any insight any of you might have as to what might be going on with me, any new information I can pursue - as well as any references you might be able to give me as far as doctors who might be specialized in those things. Specifically, I'm looking for a neurologist with some experience with blunt head trauma (or maybe neuropsychiatry? was also suggested to me?) and/or an endocrinologist with in-depth knowledge of the nuances of thyroid issues like mine, or, I don't even know. I have very little money, and insurance with a large co-pay, so I can't afford to go running around to random doctors out of the phone book - but I would be willing to risk traveling, if I had to, memory problems and all, if it meant consulting the ONE doctor who could help, or at least give me that diagnosis so I can keep a roof over my head as I try to figure out how to maintain an independent life. I'm in Atlanta, if that's helpful.

If posting doctor information on the board is a no-no (I feel like it is, but I can't find the line I thought I read that said so...) please PM with any references you might be able to offer.

Any insight y'all might have, anything at all, would be helpful. Thanks.

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8 Replies:

  • Hi. I'm at the point where I'm unable to work because of my problems - I'm on disability based on my psychiatrist's diagnosis of ADD and depression, but I'm pretty sure this is not actually a psychological problem, and am DESPERATE to figure out what's really wrong with me. Symptoms: Exhaustion, fatigue - mental and physical exhaustion. Inability to concentrate - I lose track of something as simple as a kids' cartoon - difficulty putting steps of a process together, trouble remembering things even a second after I've seen them. There are good days and there are bad days, but even on the good days I'm not "well" and on the bad days I'm entirely nonfunctional. There are other issues like dizziness and vertigo, but these are the main components. The problem started slowly, ramped up slowly over a period of about five years, from inconvenient to crippling - and around November, December, ramped up SHARPLY, and has remained bad ever since. Here's the good part. I have had Graves disease, had my thyroid removed, then radiation treatment, am on Synthroid - and all of this happened around the time that the fatigue/concentration problems first began - and they're CLASSIC thyroid symptoms, yet both my regular endo and the guy I saw for a second opinion swear that my numbers are normal. My regular endo has also done a bunch of blood tests for things like pituitary function, and I don't know numbers but he's said those are fine too. The other thing that happened around the same time was a diagnosis of bipolar syndrome (probably aggravated by the Graves) and going on Depakote to treat it - and seriously, the drug saved my LIFE, but I'm wondering if it's had some long-term effect on me other than the 100 lbs I gained in the first seven months of taking it. I've found some interesting references on Depakote and thyroid disease, but nothing specific to my situation. The second-opinion endo recommended that I see a neurologist in case I'm suffering from some kind of early dementia - and I will; but add into the mix that I had a head injury some fifteen years ago that caused excruciating headaches and messed with my reading and language skills for about five years without EVER producing any sort of abnormal MRI or test result. I don't know whether this has anything to do with it or not. (Oddly enough, at the moment my reading and language skills are LEAST affected by the concentration/memory problems.) There is no change in medication, no significant event that I've been able to find, that ties in to the sudden escalation of symptoms last winter. I've also got other stuff going on, like COPD, "pre-diabetes", etc, but again, none of it accounts for the symptoms I'm having or the severity of them. I've been tested for Lyme and a bunch of other fatigue-type stuff by my GP - he said something about my having been exposed to Lyme but not being active, I'm not sure what that means but he wasn't concerned about it - but while I love my GP, he is not any sort of expert in this sort of thing. I have friends with fibro and CFS, and my symptoms don't quite line up with their experiences, though I guess it's not out of the question... And I'm getting to the point where I not only can't work, I'm beginning to get worried about my ongoing ability to live independently - having trouble keeping up with household stuff, getting groceries, things like remembering whether the stove's on - and there's no one else who can look after me - plus, my disability only provides limited coverage for "psychiatric" illnesses, so if I can't find a doctor who can at least diagnose what's ACTUALLY wrong with me (if not fix it) I could well end up homeless in short order - so the situation is pretty desperate. So at this point I'm looking for any insight any of you might have as to what might be going on with me, any new information I can pursue - as well as any references you might be able to give me as far as doctors who might be specialized in those things. Specifically, I'm looking for a neurologist with some experience with blunt head trauma (or maybe neuropsychiatry? was also suggested to me?) and/or an endocrinologist with in-depth knowledge of the nuances of thyroid issues like mine, or, I don't even know. I have very little money, and insurance with a large co-pay, so I can't afford to go running around to random doctors out of the phone book - but I would be willing to risk traveling, if I had to, memory problems and all, if it meant consulting the ONE doctor who could help, or at least give me that diagnosis so I can keep a roof over my head as I try to figure out how to maintain an independent life. I'm in Atlanta, if that's helpful. If posting doctor information on the board is a no-no (I feel like it is, but I can't find the line I thought I read that said so...) please PM with any references you might be able to offer. Any insight y'all might have, anything at all, would be helpful. Thanks. hi there :) ... there are different subgroups of CFS. What it is specifically which makes you think it isnt that??? i'd like to hear (ive got a lot of experience on CFS/ME). Do you get more symptoms "post excertionally"? eg if you have a very busy day one day...or you much sicker the next?? eg crash. There is a subgroup of CFS who has thyriod issues.. but its usually low thyriod function so very doubtful that your diagnoses would be a part of something like that. (thou i do know one with CFS who has thyriod dysregulation issue in which she goes both high and low functioning). Dizziness and trouble with memory may be Postural Orthostatic tachycardia syndrome (POTS) ..which can occur with various other disorders. I dont have any idea if those with Graves are more susceptable to it or not. ive read that POTS is more common in those with diabetes (it can be misdiagnosesd for CFS). i suggest you get POTS ruled out seeing dizziness is a big factor in whatever you have, its commonly missed in people and can be quite disabling.
    taniaaust1 2267 Replies Flag this Response
  • hi there :) ... there are different subgroups of CFS. What it is specifically which makes you think it isnt that??? i'd like to hear (ive got a lot of experience on CFS/ME). Do you get more symptoms "post excertionally"? eg if you have a very busy day one day...or you much sicker the next?? eg crash. Well, my friend with CFS - who has done A LOT of research on it - has told me that she doesn't think my symptoms are quite typical, though she acknowledges that symptoms can differ greatly from person to person. I'll have to ask her specifically why (my memory again :P). As far as your question, though, yeah, the more I do on a given day, the more wiped out I'm likely to be the next - though not always; there's not enough of a pattern in any of my symptoms that I've noticed to help me tie down anything.I've never heard of the POTS thing you mentioned, but I'll look into it - thanks! What kind of doctor would be likely to investigate/diagnose that?
    esquamulose 2 Replies Flag this Response
  • Well, my friend with CFS - who has done A LOT of research on it - has told me that she doesn't think my symptoms are quite typical, though she acknowledges that symptoms can differ greatly from person to person.Just talked to said friend, and she says that her opinion is based on the fact that I don't have the swollen lymph nodes and body aches that are apparently major symptoms of CFS. But as I said, she acknowledges that new manifestations of CFS are being seen all the time, and that this might not be conclusive. In any case, since I've not been able to find a doctor who believes CFS is even real, let alone willing to make that diagnosis, it's almost a moot point. :P
    esquamulose 2 Replies Flag this Response
  • hi. I'm at the point where i'm unable to work because of my problems - i'm on disability based on my psychiatrist's diagnosis of add and depression, but i'm pretty sure this is not actually a psychological problem, and am desperate to figure out what's really wrong with me. Symptoms: Exhaustion, fatigue - mental and physical exhaustion. Inability to concentrate - i lose track of something as simple as a kids' cartoon - difficulty putting steps of a process together, trouble remembering things even a second after i've seen them. There are good days and there are bad days, but even on the good days i'm not "well" and on the bad days i'm entirely nonfunctional. There are other issues like dizziness and vertigo, but these are the main components. The problem started slowly, ramped up slowly over a period of about five years, from inconvenient to crippling - and around november, december, ramped up sharply, and has remained bad ever since. Here's the good part. I have had graves disease, had my thyroid removed, then radiation treatment, am on synthroid - and all of this happened around the time that the fatigue/concentration problems first began - and they're classic thyroid symptoms, yet both my regular endo and the guy i saw for a second opinion swear that my numbers are normal. My regular endo has also done a bunch of blood tests for things like pituitary function, and i don't know numbers but he's said those are fine too. The other thing that happened around the same time was a diagnosis of bipolar syndrome (probably aggravated by the graves) and going on depakote to treat it - and seriously, the drug saved my life, but i'm wondering if it's had some long-term effect on me other than the 100 lbs i gained in the first seven months of taking it. I've found some interesting references on depakote and thyroid disease, but nothing specific to my situation. The second-opinion endo recommended that i see a neurologist in case i'm suffering from some kind of early dementia - and i will; but add into the mix that i had a head injury some fifteen years ago that caused excruciating headaches and messed with my reading and language skills for about five years without ever producing any sort of abnormal mri or test result. I don't know whether this has anything to do with it or not. (oddly enough, at the moment my reading and language skills are least affected by the concentration/memory problems.) there is no change in medication, no significant event that i've been able to find, that ties in to the sudden escalation of symptoms last winter. I've also got other stuff going on, like copd, "pre-diabetes", etc, but again, none of it accounts for the symptoms i'm having or the severity of them. I've been tested for lyme and a bunch of other fatigue-type stuff by my gp - he said something about my having been exposed to lyme but not being active, i'm not sure what that means but he wasn't concerned about it - but while i love my gp, he is not any sort of expert in this sort of thing. I have friends with fibro and cfs, and my symptoms don't quite line up with their experiences, though i guess it's not out of the question... And i'm getting to the point where i not only can't work, i'm beginning to get worried about my ongoing ability to live independently - having trouble keeping up with household stuff, getting groceries, things like remembering whether the stove's on - and there's no one else who can look after me - plus, my disability only provides limited coverage for "psychiatric" illnesses, so if i can't find a doctor who can at least diagnose what's actually wrong with me (if not fix it) i could well end up homeless in short order - so the situation is pretty desperate. So at this point i'm looking for any insight any of you might have as to what might be going on with me, any new information i can pursue - as well as any references you might be able to give me as far as doctors who might be specialized in those things. Specifically, i'm looking for a neurologist with some experience with blunt head trauma (or maybe neuropsychiatry? Was also suggested to me?) and/or an endocrinologist with in-depth knowledge of the nuances of thyroid issues like mine, or, i don't even know. I have very little money, and insurance with a large co-pay, so i can't afford to go running around to random doctors out of the phone book - but i would be willing to risk traveling, if i had to, memory problems and all, if it meant consulting the one doctor who could help, or at least give me that diagnosis so i can keep a roof over my head as i try to figure out how to maintain an independent life. I'm in atlanta, if that's helpful. If posting doctor information on the board is a no-no (i feel like it is, but i can't find the line i thought i read that said so...) please pm with any references you might be able to offer. Any insight y'all might have, anything at all, would be helpful. Thanks. have you been tested for meniere's disease?this causes vertigo and dizziness.i've had it for yrs. And now losinghearing due to it.
    kris99 2 Replies Flag this Response
  • Just talked to said friend, and she says that her opinion is based on the fact that I don't have the swollen lymph nodes and body aches that are apparently major symptoms of CFS. But as I said, she acknowledges that new manifestations of CFS are being seen all the time, and that this might not be conclusive. In any case, since I've not been able to find a doctor who believes CFS is even real, let alone willing to make that diagnosis, it's almost a moot point. :Pi have what is called candidiasis and it produces symptoms exactly like yours and more.............there are books and info on the web about this sickness, i have probably the worst case ever...........i got the illness from taking antibiotics for acne when i was 19 and the dr. continued prescribing them for 11 years! i was extremely naive about medicines, coming from a poor, unsophisticated family.......i slowly began to get sick, first one thing and then another.............nobody knew what the problem was, and i was too embarrassed and confused and sick to deal with it. long term use of broad spectrum antibiotics and or birth control pills are the causitive agents; they systematically destroy the bacteria in your system , all the bacteria instead of only the problem bacteria for which you begin taking the medicine , and some bacteria is essential to keep a healthy balance in your system....................the balance is between bacteria and yeast ( you've heard of yeast infections women have ) , and if the good bacteria that exists and balances the yeast is diminished and greatly compromised, then the yeast can grow unchecked creating a huge imbalance causing a multitude of symptoms. i suffered in a way that i can't relate, and the medical community is slowly becoming accepting/ knowledgeable with regard to this whole situation. i believe that the doctors were not educated because there is no real definitive test that proves you have this, and the pharmaceutical companies suppress the idea because the lawsuits would be overwhelming......i have no desire to sue anyone , just to get well. i tried for 28 yrs. approx. to get better with limited success, but enough to comfirm the existence of what i knew i had...........have you ever taken tetracycline or other antibiotics or birth control pills? if so, and if you took them several times or for an extended period of time like i did, then you almost certainly have candidiasis. many people do because of widescale usage of these medications and long term use can't be tested for side effects really, the medicines are tested for short term periods but it's not practical to test for 10 year or more usage as the industry can't wait that long to get them to market...some doctors now specialize in this problem bevcause they have numerous patients complaining of similar symptoms and have a history of birth control and /or tetracycline / other broad spectrum antibiotics............ these drs. have been taught that this illness isn't real because no test can verify or eliminate the existence but big pharma spends a lot of money to control what information is taught and available to the public to protect themselves from financial responsibility. as drs. begin treating patients and begin believing this illness is real even though their schooling did not teach them about this, that makes it more impressive that these drs. would go against the common thinking because of the volume of patients with nearly identical stories..............i am still battling my sickness but many get well relatively quickly, the key is diagnosis!!!!!!!!!!!! you have zero chance to get better if you don't know what your problem is...... many drs. will try to identify each symptom and determine you could have this and then for another symptom they will say maybe you have this; isn't it much more likely that you have only one problem causing all of your symptoms rather than a previously healthy person developing a bunch of difficult to diagnose illnesses for no apparent reason............it makes a lot of sense and there are thousands of cases to verify this ...................read and see if the experiences of others sounds familiar to you............you may get better in days or weeks if you try the antifungal medicines and follow the diet associated but start to check into the information right away so you can get well again..............god bless you and pray for guidance and you will get well.........................mark
    Anonymous 42789 Replies Flag this Response
  • I've never heard of the POTS thing you mentioned, but I'll look into it - thanks! What kind of doctor would be likely to investigate/diagnose that? good question :P . ive not a clue. I knew i had POTS myself for 2 yrs before a general practioner doctor finally realised i had this condition as she'd just read something on it. i suggest to rule this issue in or out yourself (and then if you find you do have it, take the info to a doctor and ask for offical tests). You can tell if you have this via taking your pulse at certain times as its diagnoses is based on the heart rate changes. For more info on this http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
    taniaaust1 2267 Replies Flag this Response
  • Just talked to said friend, and she says that her opinion is based on the fact that I don't have the swollen lymph nodes and body aches that are apparently major symptoms of CFS. But as I said, she acknowledges that new manifestations of CFS are being seen all the time, and that this might not be conclusive. In any case, since I've not been able to find a doctor who believes CFS is even real, let alone willing to make that diagnosis, it's almost a moot point. :P Oh yeah.. doctors who disbelieve in an illness (CFS) which is recognised by the CDC etc. i think part of the issue is that doctors are given no training for CFS thou now there is a doctors course for it online. Im on disability then for an illness which isnt real :P, i must be a good actor or something. Swollen lymph nodes are found in 50-80% with CFS (note this is possibly only half of cases so no good indictation to rule it out)and Muscle and/or joint pain, neck pain found in 65-95% CFS cases (both these statistics come from a study on the different CFS studies out there combined) ... so yeah not having those symptoms make it less likely you have CFS but certainly doesnt rule it out as being a possibily. The Sth Australian Government. sponsored book for doctors, based on the Canadian CFS guidelines says "There is a small number of patients who have no pain or sleep dysunction." I myself thou unless I heard more to think it was CFS say it may well be something else. With many its often clear, even before other things are ruled out, that they do have CFS just throu the history, symptom complex and presentation but in your case it certainly isnt. You have none of the big pointers that ring CFS alarm bells. I've also got other stuff going on, like COPD, "pre-diabetes", etc Please share it all. There may be something you havent mentioned which would point to a diagnoses, sometimes something which seems insignificant will aid someone at this site in giving a possible diagnoses.
    taniaaust1 2267 Replies Flag this Response
  • have you been tested for meniere's disease?this causes vertigo and dizziness.i've had it for yrs. And now losinghearing due to it. Meniere's thou wouldnt cause fatigue, exhaustion and memory problems like the poster has.
    taniaaust1 2267 Replies Flag this Response
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