why does my doctor tell me there are no after effects from viral meningitis???

My doctor although a sympathetic listener, insists that there are no after effects from viral meningitis, when there clearly are. I suffer from mood swings, joint pain, back pain [ from lumbar punch procedure] so severe at times that I can't even wear a belt !! and terrible short term memory loss, yet he still doesn't recognise the fact that I had none of those before I had viral meningitis 5 and a 1/2 years ago. His idea of doing a "memory" test for me, was to say rather loudly at me.".dog, cat, tree ..now remember those words because I will ask you again in a minute " and then precede to ask me what season of the year we were in..I mean " really ?????. Is it just me ? I found that very insulting. I got the impression that he did the test to shut me up because, he doesn't agree with me that viral meningitis has after effects that can last years. Yet so many of us have the same symptoms I find it impossible to see that they are not connected, and I am very surprised that some physicians can't see that too. I am looking forward to hearing from some people that have had viral meningitis, to see what after effects they have [ if any ] and what their experiences with their doctor has been.

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  • Hi

    I am very sorry to hear about the lack of understanding you have encountered regarding the after-effects of viral meningitis. This is a problem we hear frequently and we are looking at ways to find out the scale of the problem and how we can help.

    Although most people will make a full recovery following viral meningitis, some are left with serious and debilitating after-effects.

    I am sure there are other forum members reading your post who will be able to offer their experiences. In the meantime, it may help to take along a copy of our Viral Meningitis Fact Sheet to your GP. This can be downloaded from our resource page on our website: meningitis-trust.org/how-we...

    Remember, we are here to offer help and support to anyone who has been affected by meningitis and do not want anyone to suffer in silence.

    Claire

    Meningitis Trust

  • Hi I too find Dr's have little understanding of V M. They do believe that this condition soon resolves. However it doesn't. I have short term memory loss and chronic fatigue. I get angry very quickly ( of which I never did before). I feel GP's think this is an excuse and that we don't really suffer these problems after being several years post VM. I struggled to get the Dr at occi health in my place of work to even acknowledge that VM can cause such problems. ( I work in NHS ). I struggle to hold my professional job down. Please give GP's and hospitals more research details so they can at least be updated on the condition.

  • Rest assurred it isn't just you. I had exactly the same experience (My blog 'What do Doctors Know' might help) and in the end I asked my doctor if he had treated anyone with viral meningitis before. His reply was that it was meningitis and 'it's all the same, you're ill for a month or so then you're fully recovered'. Be persistent though ask him if he has ever treated anyone specifically with viral meningitis. I took the Meningitis Trust leaflet with me and also asked him to phone the MT on 0800 028 18 28 to ask them before dismissing me yet again. In the end he had to admit he didn't know anything about VM.

    In fact most doctors don't know anything about VM but they feel they have to maintain this aura of professional supremacy in that you as a lay person don't know as much as they do. They don't like it when you are persistent but there is a lot of evidence to support yours and a lot of other people's experiences see the I had viral meningitis Facebook group for more facebook.com/pages/I-had-Vi...

    Ask him to Google after effects of viral meningitis when you are there do anything you can think of. There are also some resources you can print and take with you here:

    meningitis-trust.org/mening... on this page there is a fact sheet you can download (this is what I took to my doctor) which clearly says:

    "Recovery from viral meningitis can be very slow,but is usually complete. However, sufferers can still experience headaches, tiredness,

    depression, memory loss, and concentration problems. Whatever the after-effect, mild or severe, meningitis can change a person’s life

    forever."

    I am unlucky in that I also suffer from Mollaret's Meningitis which was 9 years in the diagnosis as doctors had never heard of it and if they have never heard of it then it doesn't exist or because its so rare I couldn't possibly have it.

    I also have short term memory problems for things like names and directions which don't fit the traditional view of memory loss, a constant headache and a whole load of other symptons. I write a regular blog here (jonad724) which I hope might be of help. I had VM ten years ago and there are times when I am still grieving for the life I used to have but be strong with doctors. Take in the leaflet and start from there, don't give up make sure they take you seriously and ask him if he has ever actually treated anyone with VM before, not just meningitis but viral meningitis.

    Hope this helps, J

  • Thank you I really appreciate. What you have said. I too suffer memory loss and fatigue. I am not the person I use to be and can't explain why exactly. Doctors do no acknowledge the condition and I feel a fraud each time I see them.

  • I had viral meningitis 10 wks ago and I have terrible memory for names of 'things' and concentration! I dnt feel like the same person and is has definately affected me! I'm a nurse on an acute ward and can no longer do my job on there as not supported well enough and even a sister said you are not the same person as you were before. I'm Constantly tired and believe this to be post viral fatigue! I'm hoping this lifts! I'm glad that I'm not the only one as I knew I wasn't quite 'myself' but wondered if it was just me! I hope all of us get some comfort knowing that we are not alone! Xxx

  • My blog posts are here: meningitis.healthunlocked.c... if you're interested

  • Hi

    I find your story very similar to mine, I had Viral Meningitis last year and I suffer from various after effects, I get moody, I struggle to sleep, I am always tired and I seem to get headaches every morning and they never go away in till about dinner time. In my first 6 months of recovery I approached my doctor to ask about the recovery period and possible side effects, the doctor told me he knew very little about Viral Meningitis and the after effects and told me just to go home and rest, even on my discharge from hospital the doctors gave me very little advice on the recovery and after effects and I was told I will probably just suffer from post viral fatigue (which I did). I have decided to run the Sheffield Half Marathon this year to raise some money for the Meningitis Trust to help them raise awareness for Viral Meningitis as many people do not know the symptoms of Viral Meningitis and seem to only focus on Bacterial Meningitis. The people at the Meningitis Trust are very good and they have a dedicated 24 hour help line for advice and if you have not heard of them before this is the number and website, 0800 028 18 28 meningitis-trust.org . I wish you all the best for the future and hope many of the after effects go away.

  • Hi. Your heart is certainly in the right place but is this way of fund raising wise with the post VM symptoms you describe?

  • Sorry- a bit late ! Just noticed the date! Well I have has VM !!!

  • Thank you all so much for your insight , I will download the leaflet , and take it to my gp. Can I just ask one more thing ? . My doctor has booked me in for an MRI scan, which I am petrified of as I am very claustrophobic. Do you think it is relevant to memory loss. I Not only have problems remembering names etc... I can watch a film then not remember 1 minute of it the next day. I find this so upsetting as I feel like I lose a part of my life at the same time. Am I being a bit of a drama queen ??

  • Nope I do the exact same thing myself. Xx

  • Reading these comments have stopped me feeling so alone, and sorry if this comes out wrong - but glad that it's not just me! I contracted v.meningitis on 31st October 2011,, I have never been so ill, spent 9 days in hospital being pumped with allsorts of antibiotics and antivirals,morphine for the pain and i.v anti sickness meds to try and stop the vomiting.

    Now 3 and a half months later I am still not fully recovered - far from it. I have to get on with normal day to day life at home as I have 4 children, but I am nowhere near ready to go back to work and luckily my employers realise this as I'm a radiographer in a busy city hospital and my short term memory is nowhere near ready for me to carry our my job and physically my dizzyness, fatigue, backpain, headaches, ringing in ear e.t.c make it impossible at the moment. As I'm off sick I have to go back to the G.P every few weeks for another sick note, it depends when I phone up which GP I see and until the last visit when I had a sympathetic GP who said it was all to be expected (& I will make sure I see her next time), the other think I should be better by now and make me feel a failure and give me the impression they think I'm "trying it on" to get time off work, when all I really want is to get my life back as I'm only 35.

    I really hope this goes soon as it's really getting me down, & hope you all feel better soon as well!

  • Hi Rhiannonj, I'm sorry to hear that you have suffered with viral meningitis, I just had to reply to you. I have the same problems with my gp surgery, that is why I started this blog, however after reading some of the other comments on here. I contacted the Meningitis Trust and spoke to someone on the helpline, she was lovely and very informative, she has sent me some leaflets that explain that not all gp's understand viral meningitis and it's after effects, so may I suggest giving them a ring on 0800 028 18 28, and having a chat with them. In the mean time try to rest as much as you can, don't try to rush your recovery [ it doesn't work ]. take things as they come, and remember every little achievement is one step in the right direction. It has been 5 and a half years now since I had VM and I still have problems, unfortunately some people just do not fully recover. I hope that my little message helps a bit, we have a group on facebook called " I had viral meningitis " and although no one on there is an expert , we can all support one another and compare symptoms or just offer support when its needed. Take care and I hope you feel much better very soon. Polly

  • Hi Polly,

    Thank you for kind words of support ( and sorry for delay in responding to you - have had problems with computer), I followed your advice and contacted the Meningits trust - who were most helpful, it was good to chat to an understanding person who was on my side, they have also arranged for one-to-one support.; I also joined the facebook group you suggested. Things are still the same for me, been really down this last week been picking "bugs" up from the children which are pulling me down further plus nursing them back to health! If you don't mind me asking how long were you off work for? I've been off for nearly 4 months and can't see myself getting back anytime soon - which is very worrying on the financial side of things! Hope your MRI went well.

    Take care,

    Rhiannon

  • Hi Rhiannon, I am really pleased to read that " The Trust" helped, aren't they just brilliant ?. Try to stay positive as I believe it all helps. I had my own little coffee shop when I contracted VM. I had strived all my working life to achieve that, and had to sell it due to the VM. I never worked in it again. I took a job as head chef about 3 years after I was ill, and couldn't cope. I have not worked since, So I have officially retired die to ill health . My life is now a constant worry financially as I have to battle with the authorities, they will not listen , and do not believe that I am still having after effects from VM. Hence the reason I contacted "The Trust " and then showed the information leaflets to my gp. As for the MRI I am waiting for a new appointment, as ironically I forgot to go for the scan..Hope you are feeling well . Try to get lots and lots of rest . Polly

  • I have to say, just because someone is in a white coat does not mean they know everything, this site will help you, as real people will tell you the side affects, we have all had the same things happen, but we all have found our way out the other side, from friends, vitamins etc. you will find your own way, i found by reading about it made me feel safe in the fact that others have had the same side affects, mine was not just the illness but the BAD treatment i had from doctors and nurses, they made my life hell, so once i was strong enough, i thought, OK got threw it, and no person will affect me, ok it was not a over night thing, its been 10 months now, and when i am tired i find it hard to cope with things, so i treat myself to a hot bath and things i like and say Look it is ok, you are haveing a bad day, but it will not last, tomoz will be better.

    our minds can also play tricks, so beware of that, but you have this site now, and you will read many great things, take heart, it will get better, and you can get threw it xxx

  • The Meningitis Trust Community Service Nurse visited me back in July last year when I was shortly out of hospital from viral meningitis.

    I really appreciated the visit at the time, it really helped me take stock and allow myself the time to regain strength and not rush going back to work. Knowing that the service was available felt very reassuring, just knowing the Trust were there if needed was a very positive thing.

    It's now been 10 months since I was hospitalised.

    It's been a very difficult year, with my health slowly improving, but never quite

    regaining the levels of energy or stamina I had before the meningitis.

    I had intense headaches for around 6 months after my hospitalisation, nausea,

    fatigue and ongoing bouts of dizzyness and confusion.

    Visits to my GP have been disheartening, with no real sense that any doctor

    I've seen has had experience of treating meningitis or the after effects,

    and they have all simply given me advice on managing the pain, rather than

    any information on anything that might improve my situation. I tend to get very frustrated and tearful and find it hard to challenge the doctor's advice.

    I've felt pretty healthy over the last three months, finally feeling like I could live

    a bit more, not needing as much sleep or taking pain medication every day.

    About three weeks ago I started having headaches again though, and on Monday this week I suffered a dizzy spell with intense headache, visual distortion, tingling and numbness down my right hand side and a feeling like I was underwater.

    I've been signed off work for a week, and given stronger painkillers and anti-nausea medication.

    This experience has given me quite a scare, and made me realise how much more healing and recovery my body still needs to go through. I'm worried about the effect me having to take another extended period off work might have, and the effect my ill-health is having on relationships around me. I was off work for nearly four months over the Summer, and there are many people I have hardly seen all year because I have not been out socialising due to lack of energy.

    While I have been quite content to give myself time and space to heal,

    trying to balance work and relaxation time, I now feel like I want to reach out for some more support from the Meningitis Trust. I'd like to find out if there is more information or support for recovery, any advice for pain management (the painkillers I'm taking seem to do very little).

    I also have had strange memory 'holes' at times when I try to recall a familiar person's name or details about an experience and I come across a total blank in my mind. It's very upsetting and I've been trying to ignore it and keep busy, but right now I find it both comforting and distressing that so many others on this blog have had similar experiences.

  • I started having burning/tingling sensations on the left side of my body the beginning of August 2012. I went to the ER and they did a CT scan and found nothing. The ER doctor said "we could do a spinal tap, but I am sure it wouldn't show anything" and of course I agreed with him only due to the fact that I was very reluctant about the idea of having a huge needle put into my spine. Anyways, I was referred to a Neurologist. My symptoms began to progress and along with the tingling I started to experience light sensitivity and extreme skin sensitivity on my back. The neuro thought it sounded like MS and she sent me to have an MRI and a spinal tap. Here's where my problems began. I ended up having a traumatic tap and it caused a leak of blood and spinal fluid which surrounded my spine. This caused me tremendous back pain and an awful headache. I couldn't take it and I went back to the ER. At this point it was getting painful for me to touch my chin to my chest (classic meningitis symptom) but the doctors didn't seem to think much of it. I had also developed a rash on my legs and then on my back (another classic meningitis symptom that they looked over) I was admitted to the hospital and they began to run a long list of tests to determine what was making me feel so awful. I stayed in the hospital for 8 days with extreme pain. They thought maybe I had typhus or west Nile but the tests came back negative. I was sent home after 8 days with no answers and a bottle of OxyContin. I made it a week before I returned to the ER once again because I was feeling so ill and the pain was incredible. They did another spinal tap and I was admitted for a second time for further testing. After comparing my two spinal tap results they determined I had aseptic meningitis/viral meningitis. After determining my ailment I was once again released with more questions than answers and a bottle of MS Contin. It is now November, 3 months after being admitted to the hospital. I suffer from chronic lower back pain and also upper back pain right across my shoulder blades. Sometimes the pain is so bad all I can do is lay in bed. I am 21 years old and my quality of life has decreased to that of an 80 year old. I have seen 3 pain management doctors, 2 of which basically told me I was a pill popper and I shouldn't be having this pain. I finally saw a doctor this week who believed me and he told me a few things that made my pain make more sense. I'm scheduled to see a back specialist in two weeks and I'm hoping for some better answers. I'm just tired of living like this. I want my life back. I never thought that a sickness could do this to someone. Exspecially one that was only supposed to last around two weeks.

    I swear my crappy lumbar puncture is what is causing all of this discomfort but my doctor says "there is no solid research that supports that". Hmmmm I wonder why the heck I had to go to the ER fot excruciating pain after having a huge leak in my back from the spinal tap

    I'm also taking 10mg norco for pain. Sometimes I have to take 2 at once and even that doesn't work. I want to ask for something higher but I'm lucky to have this so I won't push it. I also have a tens unit for my back which provides about 30 of relief.

  • 2 years ago i was diagnose to have viral meningitis. But after having meningitis i have experienced having severe headaches until now. After saying what i feel with my neurologist she told me to have EEG EXAMINATION to see if there is something wrong when i get the result she saw that there is a focal dysfuntion in my left hemisphere and after that the doctor told me that i have to undergo MRI to make sure if there is abnormal in my head.

  • 2 years ago i was diagnose to have viral meningitis. But after having meningitis i have experienced having severe headaches until now. After saying what i feel with my neurologist she told me to have EEG EXAMINATION to see if there is something wrong when i get the result she saw that there is a focal dysfuntion in my left hemisphere and after that the doctor told me that i have to undergo MRI to make sure if there is abnormal in my head.

  • I too had V M 2 years ago and I suffer from fatigue and memory loss. I find it hard to hold down my professional job as my brain does not function as sharp as it use to be. I can only did rive it as having a gold fish moment. I forget what I was about to say and forget why I entered a room. It is very embarrassing and I get very frustrated with this short term memory loss.

  • I too suffer from memory loss I call it 'a goldfish' moment. I can be speaking and forgot what I want to say in an instant. I am 3 year post VM. I get tired easily and I find I can't do my job as well as I use too. I am on the verge of giving it up. I understand fully regarding GP not understanding that's because they have no knowledge whatsoever of VM.

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