Meningitis Now
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Mollaret's Meningitis.

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

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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

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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.

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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

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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

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I understand too well-- have the diagnosis myself.

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Hi,

Thank you for your response, I too feel very frustrated, mainly with people who say they've had VM when its just a migraine, it muddies that water for the real sufferers. I've found in the small amount of research I've done most people who think they've had VM haven't, and its not been confirmed. I feel really positive but I just wish people would stop down playing this awful condition.

I work full time at present but find that really hard, but that life I suppose.

Thank you again, for your reply.

Sharon. xx

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Hi Sharon, sorry to hear that you have had Any form of meningitis, let alone vital meningitis on three occasions. I can only begin to imagine that you worry that whenever you have flu like symptoms, it will become another bout of meningitis.

I admire your courage and openness to share your story with the purpose of educating others. There definitely needs to be more public awareness of meningitis as even your husband in the medical field did not recognise the signs.

To educate others you need to educate yourself as well. By no means is VM something to be sneezed at, the recovery period can take a long time and in your case with reoccurring bouts, it would take a further toll on your body. Bacterial meningitis is a much more serious for, of meningitis. If you research the mortality rate of bacterial meningitis (for patients of all ages), you will find the two are not comparable. All medical websites will confirm that not only does BM kill if left untreated (in as little as 6 hours), septicaemia is often experienced simultaneously with BM which means that survivors not only have to deal with the after effects similar to VM patients, but they may also loose body limbs. Scarily the hallmark signs of BM are the same as VM, headache, stiff neck (but not necessarily in young children), fever, irritability, sensitivity to light and sometimes vomiting. It is rarer to come across BM survivors. This is why it is important for you to TELL people that if they suspect meningitis, they must seek medical help urgently. The treatment offered for VM is fluids, rest and recovery. BM treatment requires urgent IV antibiotics or the patenting will die. The earlier that antiobiotic treatment is started the better the chances of survival and lessens complications. I feel for you that you feel that people are possibly dismissing your illness, they do not mean to and should be more understanding. I really hope that you DO NOT have any more episodes and thank you for speaking out about your personal experience. All the best xx

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Thank you for your reply.

I am in no way saying Viral Meningitis is worse than Bacterial.

I am saying it can be just as serious.

It can, and does kill. It is known as "The Silent Killer" because it is often mis diagnosed because the vast majority of people always associate a rash with Meningitis, which only develops with the bacterial form.

In the last five years I have had Viral Meningitis three times.

Each time I have been hospitalised for two week and I haven't just had IV fluids, I have had IV anti virals for the whole time I was in hospital.

I have had to have a central line inserted as the prolonged use of anti virals damages the tissue surrounding a normal IV.

After the first bout, I was left with long term damage equivalent to that of someone who had suffered a stroke, hemiplegia, memory loss, speech problems, which each subsequent bout has worsened.

This is why I do get annoyed and upset when I hear "It was only Viral Meningitis".

Yes I have not lost limbs, suffered blindness or died, but the first attack of Viral Meningitis came close to killing me.

The problem with Viral Meningitis is that it is often mistaken for a Migraine, as it has been with me on the last two occasions I had it.

The A&E department sent me home telling me it was only a bad headache and when hours later I was re-admitted, the condition had worsened and it took longer for me to recover, and the permanent damage done was more serious, and longer lasting.

The swelling of the Meninges is a serious illness, regardless of what causes it.

After every piece of research I've read, VM is still brushed to one side. On Meningitis now, they down play it, I have read list after list of names of people who have died because of VM. If I hear another person say "oh its only VM" ill scream, walk a mile in my shoes, that's all I say!!

I'm not trying to steel anyone's thunder, I'm just scared that "Meningitis" whatever its form its a DANGEROUS condition.

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So true

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What you should know is that I also had Mollaretts VM 3 xs and the first time I was diagnosed I wasn't diagnosed in a timley fashion and was told one more day without antiviral meds and I would have had full blown encephalitis. I was having body jerks and involuntary tremors. So despite what others may be believe, VM doesn't always call for fluids and rest, and it can be deadly. Thanks for your thoughts. Just wanted to share my thoughts and real life expirences.

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Hi Sharon, I agree that VM is a serious illness and I'm sure that there are fatalities. I'm not here to "win" a BM v VM debate, and I know you are not either. I get that you are frustrated because of the side affects you are experiencing. There are different types of bacterial meningitis. Phenumoccocal meningitis is the most common, has the highest rate of mortality and IT DOES NOT present with a rash. I just thought I'd let you know that it is misconception that bacterial meningitis always has a rash (that is meningococcal meningitis that you are thinking of as it presents typically with rash in the later stages of the disease which is why Drs tell us not to wait for the presence of a rash). I wish my mum had VM as it is unlikely she would have died. She was sent home by the GP and was paralysed 6 hours later. BM has a 100% death rate if left untreated. I don't think anyone can argue that statistic, scary stuff.

That is why VM is "brushed to the side" as you said. I definitely without a doubt, agree whole heartedly that any swelling of the meninges is serious. All forms of meningitis needs urgent medical treatment. This is the message we need to send others.

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I was diagnosis with VM and was hospitalized some 17 times -- ICU x 5- starting in 1994-- in 2005 I was in ICU and according to my medical records in multi system failure -- swelling on the meninges cause symptoms similar to convulsions -- I was lucky and after these admissions I was referred to an immunologist who put me on 3 mo of IV Immunigoblin therapy, while it was incredibly expensive, I have not been hospitalized since 2009. However I still fear worsening symptoms as of now I get the headaches and stiff necks but manage at home. typically bacterial meningitis depending on the bacteria can be highly lethal immediately and timing is critical. However viral while not as rapid, can be very serious, with some liteture indicating a 30% mortality. Bacteria usually can be managed by antibiotics where as virus are not, and antiviral meds are very different than antibotics for efficacy. Regardless bacterial or viral this is an incredibly serious illness which is greatly under appreciated, for the viral version, in my opinion. As a nurse, I hear the coffee break conversations of -- oh well it is just viral, they will be fine. Not true, they might not die in hours, but the long road ahead of them can be serious. The viral patients, don't have antibotics to rid them of the bacteria.

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I agree whole heartedly with you, It is a message that need to be sent to others.

Maybe we should just say Meningitis is a killer.

Thank you

Sharon. x

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Hi, as StrawberryCream says I have Mollaret's and VM also nearly killed me too. I came within 10 minutes of my relatives being called back in but was discharged a day later because 'VM is only ever like flu and is never serious'. That I was rushed back in three days later almost dead still didn't convince the hospital that it was serious. The issue is in training doctors are told this exact same thing, I work with GPs and I have met enough consultants in my time to have asked many of them and each has said the same thing. I am now over 13 years post VM and still suffer with a variety of side effects and of course Mollaret's. I have worked out though that this is triggered by stress so I do my utmost to avoid really stressful situations and I recognise the early signs of an attack so I am able to manage it not the other way round as it used to be. The diagnosis of Mollaret's is when the symptoms come back but these are not accompanied by an actual viral attack so repetitious VM isn't technically Mollaret's but when you're in pain who cares what the technical diagnosis is. If you haven't recovered properly from the VM this will trigger multiple attacks as it strikes when you're immune system is at its lowest and so its a vicious circle if you don't rest and recover properly. If it's any consolation I completed my first half ironman triathlon (1.2 mile swim, 56 mile bike, 13.1 mile run) and have since done another two, the last was in August 2015 so there is light at the end of the VM tunnel even if it means working around the after effects.

Good luck!

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I understand everything u said, after 17 hospitalizations since 1994-- last hospitalized 2009 -- but still have symptoms especially when under stress. ------- don't understand why this condition is like a big dark secret.

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Hi I am 26 and have had encephalitis viral meningitis twice (almost two years between the two episodes) each time terrifying. I have had an array of side effects from this disease like vertigo, hearing loss, panic attacks, nightly fevers, migraines, constant back pain and I have no energy, I have fallen asleep in restaurant sitting in a chair. Its physically and emotionally draining constantly stressing on when to take my symptoms seriously like when do I go to the ER or when to just rest. My doctor told me she rarely get cases of Mollaret's, the last one she saw was 10 years ago and all she can do is give me an anti viral that "may" help prevent a reassurance.  

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I was diagnosed with Mollarets Meningitis four years ago. I have had Viral Meningitis twice, the 1st time I was 30 years old, I almost died, spent a week in ICU, the 2nd time was 11 years later, over a week in the hospital. I was sent by my Dr to The Center Of Disease Control Mn to figure out how I had contacted it twice, as a homemaker. My blood was sent to the CDC super computer in Washington, which came back as Mollarets Meningitis. Unfortunately there are many Drs that have never heard of this disease. There is limited research on exactly what prognosis, short term or long term on having recurring Viral Meningitis causes in us Mollarets. I know I now have numb/tingling fingers & toes, double or blurry vision at times, days to hours of no energy, nerve problems in my legs, recurring headaches, memory problems and days where my neck is tingling and sore, a yearly Neurologist appt with a yearly MRI, as I have white matter Disease, they don't know if it is the Mollarets or related. I also have more growing white legions every year on my brain. I have been tested for MS, other neurological diseases and 20 other diseases/issues looking for the answers to my tingling/numbness, pain and given yearly blood test and markers due to taking my daily meds to keep the Mollarets from recurring.

Unfortunately, Viral Meningitis can kill people, and it does but now imagine having it 2,5, or 15 times. Every time you hit your head, concussions cause later brain issues, science is learning. Now imagine that swelling trauma yearly with some Mollarets sufferers! It is more then just Viral Meningitis... and it can cause long term issues! We have created a Facebook Support Group for Mollarets Meningitis. There are over 200 of us, some are support givers, most are suffering this disease. As we talk, we learn our health issues are the same, shared and supported. It helps us find Drs, Support therapies and daily encouragement. If you suffer Mollarets seek out our Group! Thanks....

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I have mollarets and I also get numb/tingling fingers and toes / feel and hands.

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