Hello Everyone

I have been reading this forum for a month or so and decided to finally write. I may have this disease and I say by default as the doctors have ruled out everything else they can think of. My main symptom is my throat. I notice a few years ago that I was having a hard time swallowing and my voice was croaky. So off i went to ENT number 1, he ruled out reflux and sent me to ENT number 2. He took one look up my nose and down my throat and said he would love to fix my deviated septum ( didn't know i had one) but he had never seen anything like my throat. So off I went to ENT number 3, he did a biopsy and results were epiglottal "granulomatosis" but he did not know what was causing it. And so started my journey to different medical specialists. They ruled out Crohn's, Sarcoidosis, Amyloidosis, Tuberculosis etc. But my symptoms were not getting worse so I just went for regular checkups with the ENT.

In the meantime, i developed kidney stones. This has happened a couple of times but somehow they "magically" seem to disappear after a few months. Hmmm? Maybe they weren't kidney stones after all, they never did find a reason why I would have developed them but thats what the urologist and nephrologist said and I had never heard of Wegeners at that point so I didn't question. About a year ago, I developed another weird symptom...an area of skin hardening on my leg. I had that biopsied and was told it was just cell necrosis and would soften up and go away. Hasn't happened yet.

Back to my throat, my symptons started getting worse last summer and I had another biopsy in November with the same results. Different pathologists were consulted but all they came up with was "granulomatosis." And so I was referred to a 2nd Rheumatologist who mentioned Wegeners. He is not sure but has decided to treat my symptoms as such and see what happens. I am currently on Methotrexate, Prednisone and Folic Acid. I will see my ENT in a couple of weeks to see if the meds have made a difference and go from there.

Thank you for reading my story. This forum continues to be an inspriation to me.

Jennie