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Originally Posted by jraytn
Hi, My name is Ray Thank you for accepting my request. I am here for support and offer my take on a rare disease that I was diagonsed with in late 2011 and 2012 called Pachy Meningitis, again it is a very rare disease. Wendy gave me the information to this site, she also has this disease and we have talk via phone. My daughter Michelle found Wendy on another site she had started, we shared phone numbers and can relate to each others stories and illness she is the only other person I have found with this, but I am beginning to hear of more. I hate to know others have this disease. It has been a a long roll to hoe. I have had so many effects from this disease and the treatments for! However my neuro doc is finding the right meds for now I am not have as many issues as I had in the beginning! Praying we are on the right track.  |
Hello, Ray from Joan in Florida! Yes, I am new here too, was hoping to find support as well. This indeed is very rare and am hoping we can get more answers. I am being treated at the Mayo Clinic and so far since being seen and treated by my neurologist and neuro surgeon there have felt they are on the right track. I have more tests facing me this coming January, so will be willing to share any further information I can. You are in my prayers...by the way I just turned 61 this year, so it seems to be latent in my situation.