Thirty-two years I ago I was diagnosed with Interstitial Cystitis, which is a very rare bladder disease. I was told I had Epstein Barr Virus which caused it. It finally went away after many painful and debilitating doctors "treatments". I found that letting my body heal itself was the best way to go. I'm currently in a very painful episode of that from too much green tea (another doctors recommendation). I also have Post-Herpetic TN, caused by reactivation of the Herpes Zoster Virus. Oh boy, how lucky, I get two very rare diseases!!! I am, I hope, in remission. Do many of you have two or more rare diseases? Are out bodies more susceptible to these due to being too acidic, too toxic or ???? Just wondering. It seems viruses have a field day in my body. Just call me the "buggy" lady! Blessing to All - Susan
I suffer from chronic kidney stones, and they are of the uric variety which is rare and mostly untreatable. I have a body wide neurologic condition similar to fibro, mom had this one two and she called it polymyalgia....as yet I have no official diagnosis on that despite numerous and sometimes painful tests. Oh and of course both types of tn, bi-lateral of course. The kidney thing with the uric acid not dissolving properly does tie in to your theory and I have had that problem my whole lif. The others came later.
Very interesting about the uric acid; my mother was belching all the time and had an acidic stomach, and I used to belch all the time too - took Prilosec for awhile and that seemed to cure that. Maybe our bodies are naturally too acidic?
Brian M Howard said:
I suffer from chronic kidney stones, and they are of the uric variety which is rare and mostly untreatable. I have a body wide neurologic condition similar to fibro, mom had this one two and she called it polymyalgia....as yet I have no official diagnosis on that despite numerous and sometimes painful tests. Oh and of course both types of tn, bi-lateral of course. The kidney thing with the uric acid not dissolving properly does tie in to your theory and I have had that problem my whole lif. The others came later.
After my first MRI for face pain they did a spinal tap and couldn't find a cause for the lesion in my cavernous sinus on the MRI so diagnosed it as "Tolosa-hunt syndrome". 1 per 1 million population.
Then when I went to the ENT he came to the diagnosis of "Eagles Syndrome" from the pain in the back of my throat which is another rare one.
All I know is my face still hurts and specialists aren't so special.