Meningitis

[Secretary Petrie]

How has this disease effected you?

[sadlisa]

I had meningitis in 2001. I have had after effects since. It is very hard to find a doctor to explore what is causing the symptoms I still have. It has affected my life greatly. I have done a lot of research and have had to ask for testing. It would be nice if there was a doctor somewhere that studies this disease and its after effects. I am ready to discuss some of my theories with anyone willing. I would also like to know what after effects, if any, other people are suffering. I am very happy this forum is now running.

Thia aka lisa

[tammy]

i have mollarets meningitis. that is reoccuring viral meningitis due to the herpes virus. i have had meningitis so many times in 26 years i lost track. i have so much scar tissue from the spinal taps i refuse to have any more. i have talked to alot of docters and done a ton of reserch. there is nothing any one can do. i can only learn from every episode and try to control it myself. sometimes i think i know more than some of the experts i've seen. in fact i know i know more than them about mollarets. this is a very lonely disease because herpes is not something i like to talk about. i have alot of the same syptoms i have read in this forum. i can relate to most of the meds people have been given. i am struggling with working right now cause its hard to hold a job when you feel so crappy most of the time. if any one has any suggestions on how to keep a job i'm all ears. also i would be glad to talk to anyone looking for answers. i beleive the only help we will get is from each other. learning each others storys may help us manage the pain and sickness some how.

[kastell]

Tammy-- I also have Mollarets meningitis and have been suffering with it since 1994. I quit counting episodes-4 have been severe enough for hospitalization. I have been thru neurologists, pain management, infectious disease, and spine specialists along with my family physician. I was finally told by the last spine specialist that " I won't see 20 people like you in my career and don't know of any dr who will to know how to treat you, beyond controlling pain". I have to monitor symptoms to identify "triggers" and seek treatment before a full blown attack. Like you, I know more about this disease thru my research than any dr so far! Infectious disease dr was able to finally diagnose 4th hospitalization about 6 yrs ago--but as far as symptom relief or expectations and progression--no one has a clue. I have given up hope that i can be pain free and have become grateful when I can manage daily headaches with a "normal" routine. I still have pain so severe that I cannot get out of bed about twice a month.
How are you or anyone else who may be reading this forum managing?
I wish I had found this sooner--but recently began researching again when my symptoms have been worse with the extreme cold weather.

[dmat01]

It pains me to read the journey's so many survuvors of meningitis goes through. As a caregiver of my husband- I, too, would like to find a Doctor whom is driven to research and study the disease. It seems like there are five times as many questions to every guess the Doctors make. Usually, I find they find us intruging, are surprised by our drive, and wonder what they have to offer other than the little we have already discovered. Some day, I hope and pray that there will be a medical professional as driven to discover more than we already have found. I hope someday, this horrible disease will be something that is talked about in past tense such as other diseases that use to be deadly in times before ours. I know that my husband struggles to believe in what the medical future is when the Doctors realistically can't paint a bright or dull picture due to they just don't know that much about this disease. But the future starts with all of us..........

Don't stop talking about the journey the survivior and family members of this disease must travel. Share, Share , and share- because that is what will get the attention of others to want to know for themselves what we already know on a daily basis. By spreading our knowledge and experiences there is the potential that others will become eager to see what they can do to help. WIthout our speaking out, like in forums, with our family and friends, co- workers and neighbors, we are hid amongst them without them seeing us there.

This disease does tend to isolate. Work every day to spread outward and not retreat inward. Eeach and everyone of us have a lot to offer to so many others which need our knowledge. I remember the first days of this journey when I knew absoultely nothing but then name( meningitis) and it appeared no one else knew any more than I did. I know that this is a journey that not one of us would have chosen, but it is a journey to the finish line, and lets tackle it and win over it!