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I just came back from my second trip to the mayo clinic in rochester, and I am still don't have many answers. After being sick for 4 years I am starting to wonder if the pain I am experience is being generated in my mind rather than do to some external physiological process.
I do not have classic CF/ME. I am not tired during the day, exercise does not exacerbate my symptoms.
What I do have is
slight immune deficiency(hypogammaglobulinemia)
Insomnia(tired/wired)
Joint pains without inflammation(fingers/elbows/knees/toes)
severe food intolerances/ severe constipation(diagnosed with slow motility and pelvic floor dysfunction)
prostate pain/urethral pain
geographic tongue/mouth ulcers
lymph node pain
and many other weird things
I have never any lab work that showed an elevation in inflammatory markers or ay evidence of an auto immune condition. The only visible manifestation of my symptoms is my ragged looking tongue and skin rashes(folliculitis/acne)
I am at a loss on what to do from here honestly. Mayo clinic was my last resort and that was after seeing 15 specialist. I am fairly convinced that no one will be able to properly diagnose me.
I have been tested for everything under the sun and it is all very normal(lyme 4x).
Has anyone had similar symptoms and have you received any improvement from treatment of any kind??
I am currently taking very high dose curcumin in an experiment treatment to block cytokines, incase this is the cause of my symptoms.
Thanks everyone
I do not have classic CF/ME. I am not tired during the day, exercise does not exacerbate my symptoms.
What I do have is
slight immune deficiency(hypogammaglobulinemia)
Insomnia(tired/wired)
Joint pains without inflammation(fingers/elbows/knees/toes)
severe food intolerances/ severe constipation(diagnosed with slow motility and pelvic floor dysfunction)
prostate pain/urethral pain
geographic tongue/mouth ulcers
lymph node pain
and many other weird things
I have never any lab work that showed an elevation in inflammatory markers or ay evidence of an auto immune condition. The only visible manifestation of my symptoms is my ragged looking tongue and skin rashes(folliculitis/acne)
I am at a loss on what to do from here honestly. Mayo clinic was my last resort and that was after seeing 15 specialist. I am fairly convinced that no one will be able to properly diagnose me.
I have been tested for everything under the sun and it is all very normal(lyme 4x).
Has anyone had similar symptoms and have you received any improvement from treatment of any kind??
I am currently taking very high dose curcumin in an experiment treatment to block cytokines, incase this is the cause of my symptoms.
Thanks everyone