Hi, I thought I would raise awareness about this awful condition. I have had three episodes of viral meningitis and hospitalised due to this condition, each bout has been confirmed with a Lumbar puncture as encephalitis viral meningitis. I have been confirmed as having Mollarets meningitis/encephalitis. I can get sick at any stage and there is no cure, its a very much maligned condition, its is often misdiagnosed and mistreated. I spend two weeks in hospital and every time I get sick, my speech is affected, I've left side weakness and lethargy.
I keep being told "You're lucky its only Viral Meningitis and not bacterial" and I find this very upsetting and annoying as there seems to be a perception that the viral for of the disease is not as bad as the bacterial.
Viral Meningitis is known as the "Silent killer". People think they have the flu and just go to bed with it, sometimes never to wake up again. This is what nearly happened to me the first time I had meningitis and it was a close run thing.
Meningitis is a nasty, life threatening disease no matter what form it presents.
The viral type is too often written off as being "less serious" but its not.
I have permanent disabilities as a result of viral meningitis and find it a real struggle to carry on as normal some days.
I live in fear of getting ill again, and it is a real strain on my life.
The Neurologist who cares for me has told me that there is no cure for Mollarets Meningitis, all that can be done is to try and prevent me from becoming ill again.
I don't want to scare anyone, I just want people to realise that this is a real problem.
My husband is a paramedic and was with me when I became ill, he misdiagnose it, he thought I had the flu as so did I, I not saying that you need to call 999 every time you have a cold or flu like symptom, just be aware.
Thank you for reading .
Sharon. x
Hi Sharon
So sorry to hear you are a sufferer of repeated VM and have now been given the Mollarets diagnosis. I cannot comprehend what it is like to live knowing that the VM could reoccur at any time and many times in the future.
Thank you for reminding us of the condition, making others aware of it and providing a good understand of the impact.
A long term member on here, Jonad, also has Mollarets and also posts about the impact and his progress etc. There are also a couple of other people too on here with Mollarets. I am sure you will get some responses from those who also have Mollarets which will be good as they truly can understand what it's like to be living with that diagnosis.
Best wishes
Thank you Strawberrycream, I have seen that other have suffered as well. My only concern is that it seems that people have had numerous reoccurrences of VM but without it being confirmed, this is a worry. Without correct diagnosis this condition will not be taken seriously enough.
Hi Sharon, I to am like you, living with the fear of again developing this terrible disease. I have had it several times and with the last bout they discovered i had a brain tumor. I live in terror sometimes when i get a migraine and fear that it is VM again. My husband is always trying to pacify me at times like that. Fortunately, my brain tumor is benign and i have regular Brain scans to keep an eye on it, but again, every time i get a fierce headache the panic begin's. Its a terrible thing that we live with, so i do understand you and what you are experiencing. I have been left with some real problems my-self, and yes i am tired of being told. " O"it was only Viral you were lucky, to some extent this is true, but not alway's as you say, and i was a Nurse up until my last bout four year's ago. Have not worked since because of the long term complication's. I no longer tell people that don't know me that it was Viral, i dont lie i just say it was Meningitis, its easier and doesn't leave me feeling frustrated. I have heard of people having it multiple times with no long term effect's, so i hang onto that . I also know of people that had it twice and never again, also a positive. Being optimistic is far better a state of mind. I feel for you as i understand. having a husband as a paramedic is also a positive for you. So, Optimism and a positive outlook are the thing's to focus on. Big hugs to you xx
I'm sorry that you have suffered so much with this terrible illness and as per my reply to sharon, I wish we lived in a world where this illness did not exist. I believe though that you are doing an injustice by not telling people that you had viral meningitis. I say this not to 'downplay' the VM but for the very reason that you say people seem to dismiss the seriousness of VM, you can be the live example of how much VM affects patients in the long term. This will change people's attitudes. It is very worrisome from the perspective that you (although not lying) are misleading people to believe that you survived BM which then, in turn, makes people believe meningitis is not a life threatening condition, compromising the education that people need on this illness. Be honest, tell them you had VM. Tell them the devastating effects it has had on you. Tell them how long your recovery is and if you are still recovering. This is so very important. Educate people. If people become aware of how serious VM is, they will seek medical assistance much sooner. If the person has BM the awareness of VM will be enough to perhaps save a life. Thank you for sharing your story. You will find a lot of support on here. I lost my mum to meningitis. I want everyone to know about meningitis and am learning more all the time. X
Recurring viral meningitis seems to be more common than people realise.
I don't know why I'm only seeing these posts now. I too am a sufferer. How are you now?
I understand too well-- have the diagnosis myself.
Hi Sopie, How did they diagnose you with Mollarets?
I'm in Australia, and have still not been officially diagnosed. We are so behind here in all these things and sadly the medical community are fixated on the popular sexy illnesses so the awareness groups and fund raisers can all look terribly virtuous. People understand cancer is bad and are clueless that there are many other diseases that are just as bad if not worse in some instances.
Vx
Agree !!! Speak to Jonah on here , he’s been a great help to me
Please do, get in touch, I’m happy to help as I’m a volunteer common ambassador for Meningitis Now.
Hello Jonad724, I suppose you;re in the UK. I'm in Australia and since 1986 have not gotten anywhere really more on the meningitis. The medical field want to categorise me under some inexplicable don't know what's wrong category which is quite insulting at times. I jump off the medico roundabout to take a break from time to time, and with symptoms I'm now wondering if I have MS. this is what happens when no one gives a fig about getting the correct diagnosis. Thank fully the UK encephalitis society suggested to me I may have Mollarets and that certainly seems to be the case, but how do I get a diagnosis here in Australia. I'm stumped. The nerve demyelination and pain that has resulted seems to be another nail to cop.Cheers
V
Hi Veba, I'll PM with some suggestions if that's OK? Thanks, Jonathan
That's fine Jonathan. I'm still not quite o fay with this site and how it works. Everything seems to be delayed with announcements. Maybe it's the time difference. Where do I look for a PM?
No problem, the server is based in the UK and they send an email once a day in the morning our time hence the delay in notifications. If you go to notifications in the top bar on your home page you should be able to see my message there.
Hi jonad, I did write you a while back but didnt get any answer. Is this the right way to connect?
Hi Clarkjo, I'm so sorry I must have missed that, if you click on my profile then 'send message' it will come to me directly as a message and I will happily reply to you.
Thanks. My mailbox is chokkas so I have to find room..