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

chilove

Senior Member
Messages
365
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!
 
Messages
2,565
Location
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.