menangitisrecurrent

[angiern2]

My name is Angie Silla i am 44.Iam a registered nurse of 21 years. i have had recurrent menangitis for a total of 7 times in the past 14 years. most cases were viral with 1 fungal. i have had 7 lumbar punctures. i have seen infectious disease physicians, immunologist, and neurologist. The neurologist informed me i have something called Moleretts Menangitis. He also told me to be prepared for it to reoccur possibly frequently. I have had brain scans, blood test, numerous hospitalizations. I participated in a study at University of Pennsylvania. I now suffer from chronic lower back pain and leg pain somatic and neuropathic in nature. Do you have any information on this type of menangitis? I use excellent universal precautions on my work enviornment. What else can i do to reduce the reoccurence if possible?. I have chronic pain in my spine that radiates down my legs similar to when the infection comes, is this some type of lasting side effect from the disease or repeated taps?

Thank You,
Angie Silla Rn


This discussion is related to Recurrent Viral Meningitis.

[ascar68]

This is Anthony. Sorry we lost touch. As you know, I am a LMT. I would love t help you out with your back pain. It would also be great to hear from you. My email is ***@****. Get in touch whenever you can.
A

[girlondabayou]

Hi Angie...
The 7 times of Meningitis sounds familiar but mine has been since Oct of 08. So really, I feel I have had meningitis nonstop. I have been to Mayo 5 times and there still is no definate diagnosis. They call it autoimmune meningitis, systemic inflammatory disease of unknown origin (that's my favorite) and autoimmune encephalitis. I have had over 25,000 mg of iv steroids since Sept 09 and I am on cellcept too. (Imuran didn't work) Nothing was helping! The drs tried to get me off steroids in May and I went straight to meningitis again. On June 22 I started ivig. Finally I have some relief!! I haven't felt this good in 2 years. I am praying it continues...I am still on steroids, but I switched to 20 mg prednisone. That is really low for me. I am not sure I can go any lower although I would like to get off of them! I hate them! But I am thrilled that I am better at this point so I don't want to monkey with anything. I am 39 and have 3 young kids. This has really been a nightmare that I am just waking from. I am not the same person I was before and whether that is from so many case of meningitis I don't know. In part, I appreciate life so much more than I ever did. I am sure my meningitis days are not over...but I am enjoying every day I feel good and I take it minute by minute. Look into ivig therapy. The cost is huge but insurance did pick it up...I think we had to call it encephalitis for insurance reasons!