How to confirm CFS?
Posted , 8 users are following.
Hi guys
Can i ask for advise - how did you confirm you got CFS ? what tests were done?
I've done all the blood tests in the worlds, MRIs,gastroscopy, lumber puncture, muscle biopsy - and it all shows normal. I've got a lot of inactive HHV and EBV - but does it prove the diagnosis?
Thanks
Simon
0 likes, 5 replies
katrinablank simonkm1
Posted
Hi there! For me, it has been a 3 year process of elimination, trying to rule out other possibilities. (And I'm still not at a diagnosis yet, but hope to be by the end of the year.) I'm curious, in additon to what I have listed, what have the rest of you ruled out?
I've explored & ruled out the following:
Anemia (Ferritin should be above 50), VitB12, & Vit D
Possible Psychosomatic Symptoms (Expect one of your Docs to suggest this)
Thyroid & Adrenal Concerns
Tropical Diseases: Schistosmoiasis, Strongyloides, Filarias (Traveled to Africa)
ANA
Diabetes
Lyme Disease
CBC testing (helps doc with Red Flags for additional testing)
My Rhematology panel revealed I have MGUS & the bence jones protein. After further exploration by a hematologist, it is believed to be noncanerous, and not the cause of my fatigue. (But we know there is something happening in with my bone marrow that isn't right.)
My MRI revealed I have a brain tumor, but according to my neurosurgeon, it is not the cause of my fatigue (and likely to be noncancerous.)
2 years after spending time in Uganda, we discovered I had been infected with malaria, plasmodium vivax. I supsect my bout of malaria triggered CFS, especially since it went untreated for so long. However, more recently the BBC announced that malaria can dig its way into bone marrow and go undetected by bloodwork.
My hematologist is already ordering a bone marrow biopsy... I'm trying to find a way (in the US) to also have my bone marrow for malaria. (Does anyone know if this type of testing is already available London?)
For sure, it's a looooong road to receiving a conclusive diagnosis for CFS. Best of luck to you!
*Does anyone else have other things they've ruled out that maybe the rest of us should explore?
GeorgiaS simonkm1
Posted
jackie00198 simonkm1
Posted
wknight simonkm1
Posted
kathleen42380 simonkm1
Posted
Basically they rule out everything else before getting you in to see a specialist