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!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

Help with Diagnosis.. What the heck to call all this?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by chilove, Apr 9, 2012.

  1. chilove

    chilove Senior Member

    Messages:
    250
    Likes:
    46
    Hello all,

    This is probably off topic but I'm hoping some of y'all here can offer some help.

    I'm at the point now (after being pretty consistently sick for the last five months) where I'm thinking it's a good idea to start considering an "official" diagnosis in case I need it in the future for work disability or other legal issues.

    I'm concerned about what's best and worst for insurance and disability claim purposes and I also really don't know which diagnosis fits me.

    I'm currently dealing with:

    Adrenal and endocrine system failure (bad enough to need to be on cortisol and 5 other hormone meds but not bad enough apparently to get any diagnosis from the endo doc)
    EMF & chemical sensitivity
    Chronic Fatigue
    Cognitive issues
    Massive allergies/food sensitivities which are causing nutritional issues

    A recent new rheumatologist doc said she thinks I have Sarcoidosos but won't diagnose it without an MRI to confirm.. I can't do an MRI because of the EMF sensitivity. Honestly Sarcoidosos sounds like more of a symptom than an actual disease process that is causing anything but I'll take it if calling it that will help "validate" my condition.. but I'd have to find a doc willing to diagnosis it without the MRI...

    In the past I was diagnosed with Fibromyalgia but when I stay on a very clean diet (has to be all raw and vegan to avoid pain) and sleep routine I avoid the pain which is the major diagnostic characteristic so I don't actually meet the criteria for that any longer although I would very quickly if I went back to eating the standard American diet.

    I have the compound MTHFR gene mutation verified but that's not a diagnosis. So far I've been telling my employer its Adrenal Fatigue but it really goes much deeper than that and I'd feel more comfortable with a more comprehensive diagnosis.

    Any thoughts appreciated.

    Thanks!
  2. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,845
    Likes:
    925
    US
    Sarcoidosis is taken seriously. But to say you have it when there's no formal diagnosis? I wouldn't.

    Chemical sensitivity and allergies, people know they are real, but expect you to be able to function mostly.

    "Chronic fatigue syndrome" is not usually taken seriously, but CFS/ME is the most fitting diagnosis IMO. Now it's starting to be called neuroimmune disease/illness.

See more popular forum discussions.

Share This Page