Look it took me years to get a confirmation of diagnosis .. if some reason you can't get into Mayo University of Chicago initially made my diagnosis but because it was considered rare I was awash in you couldn't possibly have it it's too rare...well the reality was that it was rare because it was under diagnosed ....so when the ENT made the diagnosis it was doubted by Rheumatology .. I literally got every diagnosis in the book except the right one...and went through every medicine in the doc bag but either it didn't work or I had major life threatening reactions to it and still no confirmation of diagnosis.and my primary said time to call Mayo and got confirmation of diagnosis but I was fed up with the crap care...fortunately my friend got tired of hearing me get so angry at the care I was getting...that she referred me to her Rheumatologist and I finally found someone open to considering that it was what was originally diagnosed...last group of meds he tried were biologics but again my body rejected it and I landed in hospital with major reactions for two weeks. He sat me down and we had the talk about settling my affairs...but I wasn't ready to throw in the towel and quit. The answer was out there...I belonged to a support group on Facebook that had a woman who had been living with it for 30 years so I knew what I was told that I had five years to live was bullshit...and I nagged the hell out of them to start a foundation. .I put a fire in the hearth and one got started...research is now being done at NIH...I am in remission thanks to a woman in that support group that was a nurse who suggested two other options ...Wahl's Protocol and LDN...First if all you have to clean up your diet...Organic as as possible..forget fast food ... take a look at an anti inflammatory diet...follow it.. Wahl's Protocol I knew I couldn't follow...it is very rigid...so I went with trying the LDN which should have been tried first as it has the least number of side effects and for thirty years has been putting people with AI dxs into remission...I would not have as much damage if it had been used first...But I was teaching doctors all along and now it's finally starting to get the recognition both for the disease and LDN...do take a look at it.. You are going to have to be your own advocate. You are going to have to learn as much as you can. Right after the initial diagnosis I spent months in the library teaching myself...You are bright, know how to research, do it for yourself. . Go through your primary first to get an appointment at Mayo...count on yourself. There is a fibro LDN Group on Facebook as well as fibro group. Good Luck. .and hang in there. By the way the photo above is my 60mg pred/daily photo...moonface pred blush..and this is brief synopsis of 8 year journey for answers. You will have your own story.

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