New Member
 

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.:winky:

Hello, Ray, yes there are more of us...sadly..
 

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.

Hello Ray and Joanie!
 

Welcome to the both of you! :hug:

You've surely come to a great place for support.
I'm sorry to hear of this rare condition. I will have to read up on it to get more familiar. How wonderful that you both found each other to be able to share information on what you are going through.

NT is a wonderful place, down-to-earth and very caring people. It's great to have you with us!
Please let us know if you have any questions or need help finding your way around the forums.

Happy New Year!

Rae

Thank you, have been hoping to hear from Ray..
 

:wink: Thank you so much, Rae...this disease is as it is first "quoted" Idiopathic meaning "unknown"....so with continued tests they may be able to find a better diagnosis...or as my neuro surgeon, said maybe not. In any case, there are so many immune diseases including my own that I already have as a Celiac that actually opens the doors to more...I am not that surprised...Am hoping that I am not found to be unable to eat many other types of food, because losing gluten was so tough....I just loved doughnuts and wheat bread and rye bread...:) In the meantime, I have been looking at many different leads to read up about it and the many different immunes that can be part of my testing...I have agreed to be a part of a special Research program through the Mayo Clinic with my brain tumor tissues to help others.

Hoping this year is better for those who are in this special site. :)