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Known cases of CFS misdiagnosis.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Snow Leopard, Nov 9, 2010.

  1. rlc

    rlc Senior Member

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    I just use the symptom checker it's free, he he. Get a doctor to check out anything you comes up with, Also with things like insomnia maybe it's sleep apnia, or caused by the stress of being sick not the illness, so it can all get a bit complicated, maybe your cardiologist is missing something who knows, sometimes it's the realy odd symptoms that people often don't notice that can make the diagnosis for me it was hyperpigmentation, been telling docs for years that i don't lose my tan in winter and they just shrugged there shoulders and said its probably CFS, um wrong add that and my raised transferrin saturation result you get this http://en.diagnosispro.com/differen...errin-saturation-lab/33941_10555-154_154.html

    Guess who's been misdiagnosed for almost two decades I've got hemochromatosis hopefully start treatment soon but my doctors gone on holiday arrrg.

    Got in contact with a friend I hadn't seen for years, She'd been diagnosed with psycotic personality disorder, amoungst a host of other bogus pshc diagnosises for about 30 years , she told me here joints hurt, she'd had seizures and her skin came up in a strange rash when out in the sun so i entered her symtoms it came up with this http://en.diagnosispro.com/differen.../24637_34808_24828_11450-154_154_154_154.html So i told her to get the tests for lupus done, she called me a couple of days ago, she'd failed the tests and is being referred to a specialist. Why doctors don't use this kind of software is beyond me. Egos i suppose!

    All the best
     
  2. lancelot

    lancelot Senior Member

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    I'm not familiar with hemochromatosis, but i would have guessed that your year round hyperpigmentation sounds like Addison's which causes hyperpigmentation/dark tan year round. i saw an episode of mystery diagnosis and a marathon runner became disabled and had these dark tans later figured out it was hemochromatosis. he said he was going to commit suicide if he couldn't get well. At least you can now get treated and live a happy and functional life!! Good for you rlc!!! yippy!!!! what were you misdiagnosed with for 20 years? CFS?

    good thing you helped your friend there. it does sound like lupus esp for a female. i think we all know when we are afflicted with a severe physical disease not a psychological. patients just know. it's so frustrating trying to convince family and doctors. we shouldn't have to.

    The problem i have in bringing in these long list of DD is that the doctors look at it and rolls their eyes. It's too much for them to take. if it doesn't come out in their blood tests, they don't know what the hell to do with you. they rather just give you meds for the symptoms rather than trying to figure out the disease. that's been my experience. most docs are absolutely no good when it comes to CFS/ME.
     
  3. rlc

    rlc Senior Member

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    Yeah of course i was misdiagnosed with CFS, the dumping ground where doctors put all the patients they can't work out after a few tests or just can't be bothered, Hemochromatosis is gentic ironoverload it's very common, about one in every 250 people, it gets missed all the time and most doctors are totally out of date on how to diagnose it, it can present with exactly the same tan as Addisons and can even cause Addisons because of the iron building up in the Adrenal Glands. treatment can take a long time, but hopefully it's been caught early enough and i'll be fine.

    Have you got any failed blood tests? there alot more specific then symptoms and can really help narrow down the diagnosis.

    I know what you mean by doctors rolling their eyes, but the truth is they should have ruled out all the diseases that match your symptoms before they gave you a diagnosis of CFS! If you have a list that fits, try and get the doctors to do the tests for the diseases that are more common first, then move onto the rarer ones, all the infomation on every disease is on the internet.

    Sometimes testing for one thing accidentally gives a result that will lead to the correct diagnosis. The first time i failed my iron test they where looking for anemia, unfortunatly that was about ten years ago and they didn't have a clue how to interperate the result in regards to hemochromatosis, i used to trust doctors and didn't get copies of my results, so didn't find out about it for a long time, Silly me!

    All the best
     
  4. rlc

    rlc Senior Member

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    Hi lancelot, I had a look through the results you came up with on diagnosispro and noticed when you came up with congestive heart failure, lymphadenopathy isn't included in that, so it's not that unless you have 2 conditions which is unlikly.

    The trick to using this software is how diffinate the symptoms are and the order you but them in. If you have failed blood tests they go in first, then anything you can see, or feel with your hand so things like skin colour changes, rashes, easy bruising, hair loss, you can feel lymphadenopathy with your hands so that goes first. Then if you have pain in a specific area that goes next. then comes things things like nausea and fatigue because there very definate symptoms. The idea is to get perfect matches for all symptoms.

    The problem with things like insomnia are they can happen in people who are totally healthy, or for a lot of reasons that aren't necessarly related to your condition so they go in last, if it stops matching then there best left out, Alot of the symptoms that are accredited to CFS are very vauge and happen in hundreds of other condition, non refreashing sleep for example, most people with a serious illness feel just as bad when they wake up as they did the day before, also with PEM if you put anyone with a serious illness through physical or emotional stress there going to be worse for days or weeks, if you don't kill them in the process.

    So with this software it's best to stick to the very diffinate symptoms you have. I've re-entered your symptoms, and then stopped adding more as soon as the results started to not be perfect matches.It comes up with 12 possible diagnoses, all of which should have been ruled out before you got a diagnosis of cfs!

    Here's the list
    http://en.diagnosispro.com/differen...71_37707_25304_25257-154_154_154_154_154.html You'll see lupus and adrenal problems alot of doctors have trouble diagnosing these, and don't know the right tests to run, or how to interperate them, I've put links to how it should be done in this tread, page 4 i think, hope this helps and you get your diagnosis soon!

    All the best
     
  5. lancelot

    lancelot Senior Member

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    hey rlc,

    i appreciate that you went through the trouble of doing my dd again. i'm pretty sick at the moment so i have to keep this short as the sickness and mental fatigue is really kicking in having to think and type. i realized that this program is not specific enough for the unique yet very common symptoms that describe CFS/ME. If they don't have PEM, DPEM, Unrefreshing sleep, Orthostatic intolerance, brain fog, POTS, chronic physical AND mental fatigue at a minimum, it can't accurately describe what i have. i understand many symptoms are vague and other diseases can share them, but there are a few in combination that no other diseases can have. For example, PEM is shared with CHF and anemia, but not DPEM. i can walk up to 20 min on a good day and not PEM or DPEM. but if i walk 30min i don't PEM, but DPEM the next day. if i attempt a light jog for 20min, i will PEM either during or right after. What other diseases have all this?

    the unrefreshing sleep in CFS is not the same as PWC feel much worse upon wakening(not just the same feeling) and takes me 1-3hours to get out of bed with all the symptoms magnified for another +4hours. people with sleep disorders may have this type of unrefreshing sleep, but not in combination with the other primary CFS symptoms. It is this specific combination of symptoms that always points to CFS/ME and not to another likely DD as much as i want it to. chronic mononucleosis is probably the best way to describe the disease i have other than calling it CFS/ME.

    But i do think this is a good diagnostic program for well known diseases just not for CFS. So if you do have another well known/documented disease with known blood tests/imaging/physical signs that isn't CFS, than it may very likely uncover it. all my blood test have come out normal for years other than high cholesterol of 300. i've had every hepatitis and hormone test done and everything is normal. i don't have any unusual physical signs or symptoms you listed or anything out of the CFS spectrum that can point me to something else. i have every primary CFS symptom except for severe pain(athralgia, myalgia, headache, sore throat) only tender lymph nodes and the dozens of CFS secondary symptoms. i feel like i have a never ending flu that gets worse with any trivial physical activity and upon wakening(unrefreshing sleep).

    i will be seeing a new neurologist in a couple of months who specializes in CFS, so i'm hoping he can either treat me better or better yet find me another diagnosis. at this point, i'd rather have HIV or cancer(2 diseases that have not been ruled out yet) than this non treatable disabling CFS/ME.

    I will play around with this program when i'm feeling better. thank you again for the neat program and for your time looking into this for me. hope you're doing well with your treatment for hemochromatosis. i think i remember on tv that the treatment was some kind of a blood dialysis every few weeks to clean out the excess iron. is that right? hope all is well. take care bro.
     
  6. rlc

    rlc Senior Member

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    Hi Lancelot sorry to hear your not doing well! had a bad couple of days myself, the treatment for hemochromatosis is phlebotomy, they take out a pint of blood each week, because a pint of blood contains about 700 meals worth of iron,so eventully the iron levels return to normal. then they have to do it several times a year for the rest of my life. I haven't started treatment yet, docs gone away for a week (sigh) and is a bit vauge on what to do so i'm having to educate them.

    I entered some of the other symptoms you mentioned in your last post gets it down to 4 conditions if you've had all the tests for hepatitus including hep c it brings it down to 2, my bet would be lupus it's known as the diseases with a thousand faces because it can have so many different symptoms, and one person with it can have a completly different set of symptoms, then another person with it which makes it very hard to diagnose. the only way to tell is to get the blood tests for it done. I've read about one doctor who say's that 5% of CFS cases are actualy missed lupus, so diffinatly worth a look. here's some info on it http://www.lupuscanada.org/english/living/1000faces_sle1.html and here's the list from diagnosispro http://en.diagnosispro.com/differen...20_40945-154_154_154_154_154_154_154_154.html Take care mate, hope you feel better soon and i hope for your sake it is lupus at least they can treat that! try as i might i can't get a perfect match for CFS out of your symptoms, so there's still hope that it's something else thats treatable!

    All the best!!!!
     
  7. soxfan

    soxfan Senior Member

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    ric- I am having a biopsy on my thyroid next month...I kind of figured that would be the next step. As for my cortisol issues I have to wait until I see my cfs doctor next month to talk about it with him. The endo feels I don't need cortef at all...my 8 am cortisol was 8.5 but my cfs doctor says it should be up closer to 20 at 8am. I am continuing to have terrible adreanline surging problems at night...it wakes me up and I can't fall back to sleep. I get very thirsty and feel dehydrated so I drink alot of water and then have to get up to use the bathroom.

    I keep wondering if this is a cortisol problem or is this just another wonderful symptom we get with this illness..I have never had this problem in 6 years until last month. I really can't do anything till I see the doctor next month. It has been one of the worse months ever for me since I became sick.....

    Kim
     
  8. rlc

    rlc Senior Member

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    Hi Kim, really sorry to hear your still not doing well! my personal feeling on your case is that you've been the victim of some very lazy and negligent doctoring, by that i mean they should have done tests for serum ACTH, Aldosterone, adrenal antibodies etc, tests for other things that can damage the adrenal system like hemochromatosis, amaloydosis etc, before they gave you cortef.

    Now it's really hard to know what your cortisol results mean, yes they are on the low side of normal, but giving cortef to someone who dosen't need it can surppress the bodys ability to make cortisol, so it's really hard to know whats going on.

    I can see where the endos coming from in wanting you to stop the cortef so they can see whats happening, and i can see why the CFS doctor wants you on it because your results are low and it might be a Adrenal problem, but they might be low because of the cortef. None of this would be happening if the original doctor had done all the right tests to see if you actually had a adrenal problem before giving you cortef.

    My feeling on it is to get every test done to try and see if there is a Adrenal or Pituitary problem if one can't be found then maybe stopping the cortef will lead to your cortisol results improving, I think i've given you this link before but take the information to your CFS doc and see if they will run the tests mentioned in it, it might help clear things up, link http://www.suite101.com/content/adrenalinsufficiency-a1543

    Glad to hear there going to biopsy your thyroid, but again i feel this should have been done along time ago, hopefully it will clear things up for you. In the mean time be strong and rest as much as you can, this has happened to lot's of people in the world and can be sorted out! unfortunatly alot of doctors treat symptoms with meds, without first finding the underlying cause, which causes all these kinds of problems.

    Take care Kim, your in my Prayers

    All the best
     
  9. floydguy

    floydguy Senior Member

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    Yeah, I agree. I was given cortef even though I had high levels of cortisol. Some doctors are really casual about prescribing cortef but I think it should only be prescribed after a lot of consideration. I also learned to be careful of many (most?) Endocrinologists. One told me that I don't have any hormonal issues as I have a full beard - WTF?
     
  10. rlc

    rlc Senior Member

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    Hi Floydguy,I know what you mean! what is up with endos these days Cortef is the treatment for low cortisol not high! and yeah having a full beard probaly means you don't have a problem with Luteinizing hormone, but still leaves hundreds of other possible endo problems. I've had the same problems myself, took them about 15 years to even think of testing cortisol, then it's been about another 3 years before i've been able to get them to do serum ACTH and Aldosterone, they came back fine so i'm really glad i never took the steroids i was offered in the past!

    In Kims case based on her ACTH stimulation tests which is by far the most accurate i can't see any justification at all for giving cortef, theres maybe a slim chance of a pituitay problem because it starts from a low base value, but they could of ruled that out then, if they'd done serum ACTH, then focused on finding out whats wrong with the thyroid.

    Personally i think one of the biggest medical problems in the world is a epidemic of dumb doctors, who can't be bothered to look up what there supposed to be doing, and as soon as CFS is mentioned it seems to bring out the worst in most of them!!!

    Hope you can find someone who can sort things out for you

    All the best
     
  11. soxfan

    soxfan Senior Member

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    Hi ric- I wanted to let you know that when I was put on the cortef in 2006 it was based on my saliva cortisol results. I will post them below so you can see why the doctor made the choice. I do agree that further testing should have been done but I didn't know anything back then. I just knew I was really sick and wanted to feel better. My PCP at the time told me if I decided to take the cortef to only stay on it a very short time..he actually didn't want me on it at all. Plus my CFS doctor showed me a book by a Jefferies (can't remember his first name) who writes about the safe use of cortef.

    Anyway I have quit it now and will have my cortisol level checked next month by the endo. I am sure I won't have any problems because in my opinion it never helped me anyway...and I feel worse now than ever.

    I also wanted to let you know last year the endo did check my adrenal antibodies. I remember her talking about them and she couldn't do the ACTH test at the time because my cortef dose was too high. Anyway...I am off and won't be taking it again. Thanks for all your information because it was very helpful...
    I am going to post a new thread on my nighttime wakenings that you might have an idea on!

    My results in October 2006 saliva cortisol (Neuroscience)
    DHEA -S 152.0 (300-600)
    Cortisol -saliva 8am 2.6 (7.0-10.0)
    12pm 1.2 (3.0-6.0)
    4pm 1.4 (2.0-4.0)
    10pm 0.6 (<1.5)

    I also had really low dopamine (urine) 65.1 (200-300)
    seratonin 127.4 (200-700)

    I think he was correct in giving my adrenals a break but not for 4 years...maybe a month or two.

    Kim
     
  12. rlc

    rlc Senior Member

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    Hi Kim, totally know what you mean by "but I didn't know anything back then" I was the same at the start all inocent and trusting of doctors, then after a while got frustrated and started to look on the net only to find all kinds of things had been done wrong, unfortunatly for me my problems started in 1992 so i didn't have access to the net for a long time.

    I think it's good that your of the cortef, but it is likly to take a while for your hormones to settle back to their normal level, so you are likly to feel bad for a while, but at least then you can be retested and see if there's still a problem with cortisol levels.

    I'm hopeing that your biopsy will throw some light on whats going on, as it appears that your thyroid is all over the place which could explain alot of your symptoms.

    I've had a look at the those tests results, but sorry can't find anything thats matches all of them.

    I do think it's a real shame that they didn't investigate everything to find the underlying cause at the start. just to illustrate what i mean if you enter low cortisol into diagnosispro you get 47 possible diagnoses link http://en.diagnosispro.com/differential_diagnosis-for/cortisol-lab-decreased/11102-153.html all of which need to be investigated before meds are given, because they will confuse the results of further testing. I was wondering if you'd had your iron levels checked? because hemochromatosis is on the list and is a very common disease about 1 in 250 people have it.

    I'll take a look at your night time awakenings post and if i can find anything that helps i'll let you know!

    Thank you for taking the time to write out your test results it makes it so much easier to try and work out whats going on.

    I think it would be a good idea if we could have a section where if people wanted they could post their history, all their failed tests results, their symtoms and medications etc, So it's all in one place and then maybe someone could see something that might help solve their problems, it's very hard to get a idea of whats going on when people post one symptom or test result at a time. Maybe if a moderators reading this they could look into it.

    I hope things get sorted out for you soon!

    All the best
     
  13. soxfan

    soxfan Senior Member

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    Hi ric- You just wouldn't believe all the testing I have had done. It fills two pages if I listed them all. Yes I have been tested for iron and ferritin levels. They are both great. In fact I can't think of much that hasn't been tested. I am definately going to get the serum ACTH done though. Maybe that is the problem..my body needs cortisol but is not getting the message. I know I can make it when stimulated with the ACTH but maybe I don't have enough actual ACTH. It is worth testing for.

    The doctor that started treating me in 2006 did test me for tons of stuff really...He really felt the Lyme had done something to my endocrine system so thought I needed the cortef and thyroid. I really can't blame him because according to my saliva results I did need help at the time.
    I am hoping to get into a doctor in Boston that really specializes in CFS so I can really sit down and get some answers as to why I feel so wierd and sick.

    I also want to get tested for Hashimoto's to see if that is why I am all of the sudden having more problems than ever. I will have my doctor test for that next month too. He will do whatever I ask for testing...He wants me to feel better too.

    Thanks again for all your help and like I said the testing I have had is really unbelievable....
    Take care
    Kim
     
  14. rlc

    rlc Senior Member

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    Hi Kim, its great you've been able to get so many tests done, alot of people with CFS often don't even get the basics investigated. I feel that because you've had so many failed results that there's a good chance that sooner or later a underlying cause will be found. Hashimoto's is a definate to get investigated because it can cause thyroid levels to go both up and down which you have.

    When you say your iron levels are great, do you have the exact levels? The majority of doctors around the world are so out of date on Hemochromatosis it defies belief, and often look at iron levels and say there great when they actually show a major problem (happened to me) If transferrin saturation is above 44% and/or Ferritin is above 150 there is a possibility of a major problem! info on the correct way to diagnose it here http://www.ironoverload.org/Diagnosis.htm Might be worth double checking just incase it's been overlooked.

    Hope you start sleeping better soon

    All the best
     
  15. soxfan

    soxfan Senior Member

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    Hi ric- yes..my list of tests is really unbelievable. I think because I have been to so many different doctors from neurologists to lyme specialists. So they all had testing to do which applied to each of their specialities. I have to go to work today but when I get home I will look up my ferritin and iron levels. I just had them done this summer and will post them so you can check them out...Thanks
     
  16. soxfan

    soxfan Senior Member

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    ric- okay so I looked up the tests I had for iron and ferritin...they were iron- 126 (50-170) range
    ferritin 57.2 (8-388) range

    I guess because they were both in the normal range the doctor said they were okay.....
     
  17. rlc

    rlc Senior Member

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    Hi Kim, the tests that you've had done are incomplete! they should include Transferrin saturation, which is the most acrurate for hemochromatosis, Your ferritin isn't high and most doctors will tell you that it means you don't have hemochromatosis but in some people high ferritin is a very late sign and they can be sick for decades before this happens, Your irons in the higher part of the normal range, but this again dosen't prove anything.

    Because hemochromatosis can cause the symptoms and test results you have it's important to get it investigated properly. Get your doctor to do Complete iron studies and it's best that their done fasting. Sorry i can't give you an accurate answer but your docs haven't run all the right tests. Thanks for including the referance ranges, they use different measuremeants in different parts of the world so it can get a bit confussing.

    All the best!
     
  18. carol

    carol

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    An opthalmologist has just told me I have seriously dry eyes,and now my husband thinks I may have sjrogens disease and not ME. I have to go back in the new year so I'm going to ask. It took 6yrs of red sclerotic eyes and numerous trips to the surgery before I got referred,and then 4trips to the eye clinic before I just happened to see a Dr who diagnosed the dry eyes. I have a pos ANA plus all the symptoms fit. Either way its a **** diagnosis. I've not heard anyone else talk of dry eyes so I dont know if it is an ME symptom or not. After having spent two years with brucella mellantensus, brucella abortus, and glandular fever (all together) but being told that I was malingering nothing surprises me anymore.
     
  19. soxfan

    soxfan Senior Member

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    I have had a problem with dry eyes for the past 4 years.. I have seen the eye doctor many times to get checked but they just tell me to use a non preservative eye lubricant drop.
    For a while it was a major problem for me but in the past year it has subsided a bit although I still go through times when they are painfully dry. There were times when I just use to keep them closed because it was so painful..

    Kim
     

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