I know some of you are asking right now if this title is necessary? Well, YES I do believe it is necessary for me to talk about this. Afterall, I have to live with it, right? I have decided to blog about this to ask for acceptance and understanding from you. I have tried for a number of years to hide it and pretend that I am normal. LOL Some of you are laughing right about now. Ok, so I'm not normal. But hey, at least I love you.
Ok, now for a little background of this lovely handpicked syndrome I have. Its name is Mollaret's Meningitis. In a shorter description lets just call it reoccurring meningitis. Yes, you can get it more than once. I was first hospitalized with this in 1987 when I was living in Austin, Texas. The doctors back then had no idea what I had, only that it was viral meningitis. I was in the hospital for a week, but at first they did not think I would survive this. Much to the doctors surprise, I woke up one day feeling much better just after they told my mom it didn't look good. The doctor I had was really intrigued with this and decided to call upon several other disease doctors to come and evaluate me. They did some research and decided to document me as an unknown disease/syndrome and had me sign a release to put the findings in a medical book of some sort. I was named the mystery patient of Seton Hospital.
Some of you might be asking, well what is meningitis exactly? Meningitis is basically swelling of the meninges surrounding your brain. This is directly related to the spinal fluid and creates much CNS pressure. CNS is your central nervous system. Ok, so now we got all that figured out. Then you can guess what the outcome of this is after getting it over and over again, but more on that later. The cause of this is a little more difficult to explain because there are many virus's and bacteria that can cause it. Mine however is caused by the varicella virus which is also known as the "chicken pox" virus. Shingles is also caused by this virus and yes, I have had shingles multiple times as well. Very painful. Please remember that if you have ever had the chicken pox, you carry the same virus inside of you and can one day suffer from shingles. Be grateful you didn't get this syndrome attached to it because as you will see shortly, it can be very dibilitating for me at times.
Lets go back to the week before I was first hospitalized and see what brought this on. I remember that during this time, I had been suffering from ulcers. My father had just passed away the year before and our family had experienced lots of changes including a move from Midland to Austin. My mom had made me a doctors appointment for my stomach issues. The doctor had ordered an EGD to be done so that they could look into my stomach with a scope. Well, they have to put you under for this procedure. I believe they used some kind of demerol cocktail because I felt great when I was coming off of it. I felt so good, that I decided to clean house, clean all the cars and then I cleaned out the boat. Yes, all in one day just right after the procedure was completed. I should have been resting, but the medication made me feel like a super human or something. Anyway, I finally got pooped and went straight to the couch to take a nap. I guess I fell out for a long long time. I woke up to my mom freaking out and putting cold wash cloths on my forehead. My head was POUNDING and SPLITTING IN TWO. Hearing was extremely painful. Yes, hearing with my ears! Its very hard to explain, but its easier to say it was the headache from hell! I tried to get up and that made it worse plus my back was in excruciating pain and I could barely walk. Take your worst pressure headache and multiply it by 100. Im not exagerating either. Anyway, my mom drove me to the hospital and they admitted me immediately and put me in quarantine. The quarantine was done in case I had some kind of bacterial meningitis because as we all know, that is highly contagious. But that was ruled out and it was determined that I had viral meningitis. And this was of course the 7 day hospital stay I already spoke about previously.
After my release from this hospital stay, I was told to rest and to expect a full recovery. I was a teenager and I remember waking each day wondering why I didn't feel my normal self. I just felt drained and was suffering from constant headaches. Not the horrible one, but a nagging headache. This headache would continue even until this present day. Ok so fast forward to 2004. In January I was at ATM University taking my pest control exams for licensing with what I thought was bad allergies or a bad cold. I passed my test and headed back to Belton. On my way home, I started feeling sick, bad headache, dizzy and my hearing had changed. Yep, I knew I had meningitis! I went to my doctor here in Belton and as soon as I saw her (in tears from pain) I said, "I have meningitis." She said, "how do you know this"? I said, "because I've had it before"! My doctor is a very good doctor, but even she said, "thats impossible! You cannot get meningitis more than once"! Now, I don't know what doctor came up with idea of only getting meningitis once, but they were wrong and they need to fix this error!! Anyway, I of course had yet another spinal tap and was confirmed once again to have meningitis. I was put in the hospital for treatment. Now, the doctors here at Scott & White were baffled too. They had not seen this before and so let the circus begin. I was seen by 30+ doctors. Yes, a lot of doctors. Look, when they say they are a teaching hospital, they mean it! I was on display no doubt. After a week, I was once again released to got home with a diagnosis of viral meningitis with unknown ediology. I guess I should note that during this time, I was under a lot of stress. My husband at the time had a drug addiction and was verbally abusive. His exwife had passed away and his two daughters came to live with us. They were suffering from severe emotional issues due to many parental environmental issues and grievances. Between his addiction, abuse and the kids; I had my hands full. I remember declining medication for myself because I was worried it would come up missing and I didn't want to add to his craving of any drug being in the house. So, I suffered and tried to remain strong for the kids and continue on. By August of the same year, the stress had taken its toll. I had another bout of meningitis and was hospitalized yet again. This time would be different. This time they figured out the ediology, the cause, a name. Mollaret's Meningitis Syndrome. Finally, I knew what was wrong with me, but discouraged to find out that there would be no cure. They said it was very rare and that only 69 Americans had been diagnosed with it. Wow, thats not very many considering we have a bunch of peeps in this country. Anyway, the doctor I had thought he might have a treatment that could help me, but it would mean staying in the hospital for 2 weeks with intravanous drugs. Well, there was no way I could do that given my unfortunate circumstances at home. (And yes I am very well aware that I played a role in making choices, so I'm not claiming victim here...I am a survivor. I could write a book about this tragic relationship experience but I will save it for another time.) So, I decided to do the treatment myself at home with the help of a picline and home healthcare nurse visits. This treatment did help me a lot. In fact, I have only been hospitalized twice since then and for short durations. I have had IV treatments in the ER on several occasions but no more long hospital stays.
Your probably thinking that it sounds like everything should be good now. Well, there is always a silver lining along with suffering. Let me explain. About 4 years ago I decided to create a support group webpage for Mollaret's Meningitis to see if I could find any of the other 69 people with this. I was shocked at my response! I now have over 200 people on this site who suffer from MM. Granted it is open to the world so not all of them are from the US, but it is more than I thought would respond. Plus, we get at least one new person a week who joins. I've met a lot of great people through this support group and several of them help me run it. One great thing this support group page has revealed to all of us is that we all carry the same malaise or syndrome. So, while there is limited research on this through the medical industry; we have been able to conclude many things for ourselves. We have done our own research per say. We don't need to look for a specialist because we are the specialists. We know more than the doctors know. Its really sad but at the same time its priceless. The following symptoms are part of the constant daily syndrome: Headaches, back/spinal pain, knots on the spine, increase spinal pressure that also affects the eyesight(photophobia), hearing loss(phonophobia), brain damage (ie cognative thinking/behaviour, memory loss, slurred speech), can't think straight or say the words you want to, emotional issues (ie sluggish thyroid and depression) nervous system disorders that mimmick MS and some have later been diagnosed with MS along with the MM, restless leg syndrome, muscle twitches, fibromyalgia, joint pain, nodules on joints, enlarged lymph glands, chronic pain. There are several in the group that have had to go on total disability due to this syndrome. It is dibilitating BUT it is livable. I mean there are many diagnosis that are worse than this! The scarey thing with MM is that if you get a cold, or pneumonia you will get meningitis along with it. That along with the brain issues and pain are the most dibilitating factors of MM. But the worst part of having this, is the lack of acceptance and understanding. For the most part, we don't look sick. Society today is visual, and they only accept and understand what they can see. I have walked away from conversations with people who look at eachother and laugh at me. Maybe it was something I said that made no sense? I have family members who expect perfection out of me and will accept nothing less. Problem with that is no one is perfect and I am far from it. I have lost control a time or two and people will hold grudges against me for the rest of their lives. I have even recently lost my job because of issues with the emotional side of this. People expect you to perform miracles in a days work but don't even know that I have to take pain medication every day just to be able to walk. All of this treatment is not their fault, its because I don't look sick. And there inlies the silver lining. I think the reason the support group is so successful is because its a place we all can go to and not feel like we are crazy. We finally have someone who understands. Its an amazing feeling and it is what helps us move forward.
So take this blog and think on it a bit. I apologize to anyone reading this in advance of knowing me or if you have experienced any of this from me in the past. I realize I'm not a peach to be around sometimes and I'm sure it can be quite frustrating dealing with me sometimes. Try walking in these shoes, I know.
I have learned a lot by having this syndrome and it is and will be an everlasting part of my journey through this life. God has a plan for each and every one of us. I have hid this from a lot of people in my life but I can no longer hide it. As I get older, it gets older. And maybe my testimony will help someone else. My wish is to help others if I can and to learn how to ask others for a little help too. Thanks for reading and God bless you and your family for a happy new year in 2013.
~Michelle Whitt~
