1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME/CFS: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Known cases of CFS misdiagnosis.

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

  1. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,855
    Likes:
    1,520
    Florida
    great info RLC ... I think we can understand now why most doctors don't bother to look for the cause of someone's ME/CFS. I wonder how many of us have several of those diagnosises that you listed. I'm good for about 20 myself. And I wonder if it has anything to do with our levels of disability too ? Having multiple diagnosises certainly makes treating each condition challenging ... In my case, I suspect that eating gluten set me up for problems in every organ in my body. Gluten ataxia was just one piece of the puzzle.

    I'd add leaky gut to your list. Which means food intolerances, candida, parasites, dybiosis, nutritional deficiencies, heavy metals and chemical intolerances can play a role. DAN! treats autistic kids for this ...

    FWIW ... I was just at my celiac support group meeting the other day and couldn't believe how many times these people were biopsied for celiac and it came back negative. Just their last ones prior to giving up gluten came back positive. All those who tested post gf, had negative biopsies ... It really makes me wonder just what celiac disease is and when does it happen ? These people are as old as I am, 55, and ate gluten their whole lives ... tc ... x
     
  2. dannybex

    dannybex Senior Member

    Messages:
    2,241
    Likes:
    562
    Seattle
    Misdiagnoses...or multiple factors/triggers?

    Personally, I think that many of the things listed in some cases in this thread should not be considered 'separate diagnoses' -- or misdiagnoses, with the clear exception being undiagnosed celiac, among others. In fact, having separate diagnoses may just cloud the picture even further, but of course this depends on the individual cases.

    Perhaps I'm misunderstanding you X-Choco, but I would consider leaky gut, to be one of the multiple causes or triggers in developing CFS/ME. Leaky gut can be caused by many different things as you list above, but the end result can certainly be a disabled body and dysfunctional immune system.

    I consider all of those things that may contribute to intestinal permeability to be potential contributing triggers for CFS. They can definitely 'play a role' as you say. Same goes for low vitamin d, b12, folate (see Rich Van K's extensive posts on the last two), etc., etc..

    Just one example: A guy in our local support group came down with classic sudden onset CFS/ME, diagnosed at first with a 'stubborn' mono infection. He started on treatment for the mono, which went on for a year and a half, with no progress...in fact he was going downhill.

    It wasn't until he found a new doctor who ran a CDSA from a decent lab, and found he had a parasite and fungal infection, that they got to the root of his CFS. It took another 9 months of treating that with antiparasiticals, antifungals and high dose probiotics, before his gut healed, and he slowly -- very slowly -- started to feel better. About six months later he was able to return to work.

    He had classic CFS/ME -- fit the CC definition -- but there were multiple factors, none of them misdiagnoses -- just factors or triggers -- that needed to be addressed before he could begin to recover.

    Just my two cents. :)
     
  3. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,855
    Likes:
    1,520
    Florida
    Hi Danny,

    I'm not sure I understand this .. nothing new there ... lol ... I thought we'd decided earlier in this thread that if treating someone's main condition cured their ME/CFS, then their ME/CFS was really a mis diagnosis.

    Many celiacs complain of being tired and get the CFS diagnosis. At the time of diagnosis, most celiacs are low several nutrients, including B12 and iron which could cause nuero problems. Those nasty gluten antibodies cause problems too ... But most of the celiacs I've met online or in person, give up gluten and are fine again. Elisabeth Hasselbeck is a good example of this. She couldn't have children until she eliminated gluten and now she has 3. Her body simply couldn't handle pregnancy and dealing with gluten. It's frustrating to me really. I'm not the normal celiac

    Because my nuero symptoms are mostly under control, I consider ME/CFS just to be overwhelming fatigue accompanied by post exertional malaise now. IMHO, it's the only reason, I still have this diagnosis. I'm not sure how someone who has a long list of diagnosises fits into the ME/CFS defintion just yet ... From looking at other PWCs, I can't see how someone who's as fragile as I am equates to ME/CFS. Unless, my fatigue and PEM are just a nutrient or hormone I'm missing still ... From what I've seen, it looks like dysautonomia / OI aren't necessarily a part of ME/CFS either.

    I hope that made sense ... lol ... I've got to run some errands now ... tc .... x
     
  4. waiting

    waiting Senior Member

    Messages:
    216
    Likes:
    245
    Dannybex, I am curious as to whether you know if that guy in your support group had (a) a recurrent sore throat; and (b) post-exertional malaise?
     
  5. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi lancelot i've used the diagnosis pro software to answear your question, tender lymph nodes is called lymphadenopathy, so i entered that and chronic fatigue it came up with 53 possible diagnosis, including Lupus, Hyerthyroidism, Addison's, alot of other Adrenal problems, Lyme, hepatitis C etc all of which get mistaken for CFS. you can see the full list here http://en.diagnosispro.com/differen...emic-chronic-fatigue/34460_25271-154_154.html
    All the best
     
  6. dannybex

    dannybex Senior Member

    Messages:
    2,241
    Likes:
    562
    Seattle
    I agree with that. IF treating one of these things completely cures their symptoms, then, yes, they were misdiagnosed in the first place. But I have yet to meet a single person, in these online groups, or in person, for whom that occurred. (Just now read about JAH's aunt's heart defect, and the hepatitis misdiagnosis...so of course those make sense. )

    I can certainly understand how frustrating that must be! But the examples you give are perfect ones for misdiagnoses, if their health improved after going completely gluten free.

    Well...the first part makes sense (to my foggy brain), but not sure about this sentence: "From looking at other PWCs, I can't see how someone who's as fragile as I am equates to ME/CFS." I don't understand that one...???

    But orthostatic intolerance/dysautonomia are definitely on the Canadian Criteria list of ME/CFS symptoms...so there must be something, some factor or factors that are causing these symptoms to persist. The list could be endless...which of course is why this is so difficult to treat. But you've made so much progress, I'm sure you will eventually find the answer or answers. :)
     
  7. dannybex

    dannybex Senior Member

    Messages:
    2,241
    Likes:
    562
    Seattle
    Hi Waiting,

    Not sure about the sore throat, but I would imagine he did, if he had classic mono symptoms -- he's spoken about 'flu-like' symptoms. And he definitely had post-exertional malaise.
     
  8. dannybex

    dannybex Senior Member

    Messages:
    2,241
    Likes:
    562
    Seattle
  9. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,855
    Likes:
    1,520
    Florida
    Hi Danny,

    I have to tell you .. this thread is hurting my brain now . lol ... I think we're in the chicken and egg category ...

    It's been at least 4 years since I was at www.celiac.com but that's where I first heard of people being misdiagnosed with CFS. The NIH actually lists CFS as a misdiagnosis for celiac. I have the link somewhere if you want to see their article ...

    And yes, the examples I gave were of celiacs who were misdiagnosed with something else. This happens ALL THE TIME ... all the time ... allllllll theeeee tiiiiiiime ... lol ...


    Danny said ... Well...the first part makes sense (to my foggy brain), but not sure about this sentence: "From looking at other PWCs, I can't see how someone who's as fragile as I am equates to ME/CFS." I don't understand that one...???


    What I mean is that I don't think everyone diagnosed with ME/CFS has all the complications that I do ... like celiac, ataxia, myoclonus, thyroid antibodies, dysbiosis, candida, multiple nutritional deficiencies, adrenal fatigue, kidney stones, vulvodynia, repeat UTIs, etc etc ... I "think" this is what makes me disabled but I'm not sure. It certainly adds to the challenge ...

    please don't take this to mean that I don't appreciate everyone's struggles with this DD. I empathize with anyone who has to deal with this DD and can't function like they want to. And I'm sure that there are quite a few out there who have a list of diagnosises similar to mine.

    I'm not up on Canadian definition. I usually think CDC ... meaning fatigue, brain fog, sleep problems and nuero issues. Good to know that they reference OI and dysautonomia.

    Thanks for the vote of confidence. I'm an optomist but I really doubt I'll recover enough to function outside of my GF bubble ... lol ... IMHO, My body is just too weak ... thanks for the info on Thiamine. I read something recently about a bioactive form of this that I've been meaning to research further. It's called TTFD but that's all I know so far.

    tc ... x

    ETA ... It just dawned on me. All I need to do is Meditate ... roflmao ...
     
  10. dannybex

    dannybex Senior Member

    Messages:
    2,241
    Likes:
    562
    Seattle
    I get it now X-Choco, thanks for the extra details. I do think that many with CFS have most of those other symptoms/issues, but perhaps the thyroid antibodies, the vulvodynia and UTI's are less common, and probably separate from a diagnosis of CFS. ???

    Sorry you're going through all of that...I think that if you've come so far dealing with a majority of issues, that you'll eventually find the answers for these as well.

    d.

    p.s. I love this part: "This happens ALL THE TIME ... all the time ... allllllll theeeee tiiiiiiime ... lol ... " :)
     
  11. soxfan

    soxfan Senior Member

    Messages:
    677
    Likes:
    226
    North Carolina
    I think I am actually a person who was misdiagnosed with Lyme rather than my real diagnosis which I totally believe is CFS...I was on abx for 30 months and really had no resolution in my two main symptoms which are of course chronic exhaustion/fatigue and muscle twitching with serious nerve pain in my calves. The doctors still thought it was Lyme and continued to treat even though it wasn't helping..I just kept hoping it would.
    Never had a positive test for anything...Just hypothyroid and low cortisol levels...been sick 6 years and still trying to figure out what is going on.
     
  12. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi soxfan Lyme tests are notorious for giving false positive results, which can lead to people being treated for it when they havn't got it, hopefully the new vovo lips test will sort this situation out, did you manage to get to the endo to get your thyroid and cortisol problems etc sorted out?
     
  13. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
  14. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    Thank you for the link! Of the 53 possible diagnosis with tender lymph nodes- 24 are an infectious disorder that includes CFS, 3 are Granulomatous, Inflammatory Disorders, 14 are neoplastic disorder(cancer), 5 are Allergic, Collagen, Auto-Immune Disorders, 5 are Vegetative, Autonomic, Endocrine Disorders, 1 hemolytic anemia, 1 phenyotoin drug toxicity.

    Tender lymph nodes points to a diagnosis that is ~90% due to infection, cancer, or immune disease. Everyone should take a look at this list and check to see if you have tender lymph nodes along with the other hallmark CFS symptoms. I am certain that tender lymph nodes and/or enlarged lymph nodes is a must symptom for a diagnosis of CFS/ME.
     
  15. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    rlc,

    Can you add a few more cardinal symptoms of CFS/ME to the list in order to limit and make the DD more specific to a CFS-like disease? Right now you added 2 symptoms- Lymphadenopathy Systemic(tender lymph nodes), Chronic Fatigue which comes out to 53 DD including CFS.

    Can you add PEM and DPEM, Unrefreshing sleep, Sleep problems(insomnia, hypersomnia, frequent wakenings), cognitive problems-(short term memory, concentration), Nausea/Malaise, Pain, Orthostatic Intolerance(extreme lightheadedness in the upright position), and both disabling physical and mental fatigue/exhaustion. These are all key symptoms of CFS/ME and i would like to see what the DD looks like with these hallmark symtoms. thank you for your help!
     
  16. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi lancelot i'll do my best, but it's important for people to do it based on there own individual symptoms, instructions on how to use it are here http://en.diagnosispro.com/diagnosispro_help/generate_a_differential_diagnosis_list/

    You can also enter failed lab results if you have any. Alot of terms used by the CFS community are not used on this site, such as PEM, which is covered under terms like chronic fatigue, malaise etc. So sorry i can't enter that exact term and some of the others you requested.

    Its also important to remember that meds my be causing symptoms that arn't part of the orginal condition, which confuses things and people may have more then one condition. There is another diagnostic software program that is reported to be even better it's called Isabel but cost about $750 a year to use. Anyway I've entered some of the other symptoms so you get a general idea.

    Lymphadenopathy, chronic fatigue and malaise equals this
    http://en.diagnosispro.com/differen...ue-malaise/34460_25271_25304-154_154_154.html

    Add myalgias you get this http://en.diagnosispro.com/differen.../34460_25271_25304_42070-154_154_154_154.html

    Add nausia get this http://en.diagnosispro.com/differen...71_25304_42070_37707-154_154_154_154_154.html

    Add short term memory loss you get this http://en.diagnosispro.com/differen...2070_37707_40672-154_154_154_154_154_154.html

    Add Dizzyness you get this http://en.diagnosispro.com/differen..._40672_25040-154_154_154_154_154_154_154.html

    Add Orthostatic hypotension you get this http://en.diagnosispro.com/differen...40_10969-154_154_154_154_154_154_154_154.html

    Like i say it's important to enter your own symptoms and there may be more then one thing going on and remember the symptoms that are listed for each disease are the main ones and i've found ones for the condition i have that aren't on some of these list. It's not perfect but light years ahead of alot of doctors. This site is also very good when it comes to lab tests.

    All the best
     
  17. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    Excellent bro! yes, i see this is going to be specific to everyone as i don't have dizzyness, but instead have lightheadedness/brain fog and i don't have orthostatic hypotension but orthostatic intolerance and POTS. Some of the most important CFS hallmark symtoms are PEM, unrefreshing sleep, and sleep problems(insomnia or hypersomnia)

    when you added myalgia, nausea, and short term memory loss there is just 8 DD of which i've been tested to be negative for 7, but i've never had the 8th DD which is a HIV test! Although i have a slimmer chance of hiv than winning the lottery that may be my next test!

    Thank you again rlc. if i can figure out how to use that software, i will put in my specific symptoms to get some more accurate DD's. Everyone should do this and give the list to your doctors!

    This is INVALUABLE!!!

    Take care!
     
  18. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Glad to help, have fun with the software if you get stuck let me know and i'll try and help, another good site is this one http://symptoms.wrongdiagnosis.com/ you can add symptoms there and it wil often give good answers

    All the best
     
  19. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    i signed up and finally figured this out a bit. I'm just playing with the symptoms right now nothing of the labs, imaging or diagnostics.

    So far i got these 10 symptoms into the DD list and it has spit out only 1 diagnosis when i added insomnia and didn't change even after i added the last 2 symptoms of fatigue prolonged after exercise, and fatigue tiredness exhaustion. It all points to only one diagnosis which is CONGESTIVE HEART FAILURE. I've had a cardiologist check me out many times and he says i have no heart disease of any kind although i have a cholesterol of 300 and was a bodybuilder for 20 years! If i peel back some symptoms to get a few DD, then it all points to HIV or Congestive Heart failure. Which one do i want? HIV, CHF, or CFS??? Dammit!

    Differential Diagnosis For Chronic Fatigue, Lymphadenopathy, Nausea, Short term memory loss, Lightheadedness/giddyness/spacey, Malaise, Insomnia, Fatigue Prolonged after Exercise, Fatigue Tiredness Exhaustion

    http://en.diagnosispro.com/differen...5058-154_154_154_154_154_154_154_154_154.html
     
  20. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    nice site. it has a "ask a doctor live" so i asked for a DD list for CFS and they asked me if i was willing to pay $24 for a satisfactory answer! LOL! there are 18 real MD's online right now with their pics and resume waiting to answer your questions for money. it doesn't seem like you are required to pay them just if you're willing. LOL!
     

See more popular forum discussions.

Share This Page