"Probably" Viral Meningitis

[Phileas]

Hi Guys,

I am new to the forum and I would like to find out more about viral meningitis.

Firstly, it is my wife that has been ill now for around 2.5 months. After 7 visits to a GP in the early stages, she has "had" tonsillitis, bacteria infection, cellulitis, tinnitus, flu virus, a virus, severe headaches, swollen nymph nodes in neck and jaw plus more!

My wife was referred to A+E after 6 weeks of GP visits, spent 12 nights in hospital with suspected meningitis. After 2 lumbar punctures, chest x-ray, CT scan, MRI and been tested for umpteen different illnesses with blood tests, stool tests, mouth swabs and urine tests pus seeing so many different doctors including infectious disease specialists there found no illnesses which caused her "probably viral meningitis". BTW, she has been hammered with antibiotics, and a number different types plus viral type meningitis which was ruled out eventually and stopped.

I was told by the infectious disease consultant that meningitis is an infection and that something causes it most often bacterial or viral. Anyway, after been isolated during her stay in hospital (with full body armour to enter) and given the all clear for all their tests, she was told she could go home. When leaving the hospital she was told she had a very small lesion on her brain (from MRI) but not enough to cause concern but enough to be told to return in 1 year to have another MRI. The doctor (junior) also told my wife that she will be referred to the ENT outpatients for more testing but this was nearly 2 weeks ago and still waiting for an appointment. The doctor said they did not know what caused the "probably" viral meningitis which is why she is been referred to the ENT specialist which they do not have in local hospital.

My wife was much better when she left hospital then when she entered, sever headaches left and she could walk plus her blood inflammation levels had dropped back to near normal. However, she still has swollen nymph nodes and crazy tinnitus with noises of engines in her ears.

So, the reason I say "probably" viral meningitis is that I cheekily opened the letter from the hospital which I had to give to my wife's GP. And, inside the letter said she "probably" had viral meningitis. On our visit to the infectious diseases dpt, the consultant did say Lympocytic Meningitis was suspected but it was NEVER confirmed to me or my wife so I really do not know even now what kind of meningitis it was that at all!

Sorry for the long winded post but thought it is best to explain it all first.

Anyway, I would appreciate any advice. My wife and I was expecting this to clear up after leaving hospital and she was hoping to go back work within a month but from what I have read in this group, it is becoming worrying that she will not be able too. Also, my wife does not understand why she is not getting better and thinks the doctors should be doing more to find out what is wrong with her. We still worry that there is something else wrong with her and need to find out what it is, I have even booked dental examinations and eye tests to rule these out but it seems from what I read in the group, that her symptoms for post viral meningitis this maybe be normal? And, does anyone else suffer from the tinnitus so bad?

Again, sorry for long post, we are both so worried.

Thanks in advance.

[Lozza_j]

Firstly I’m sorry to hear you have both HAve had a tough time recently, VM has a lot to answer for that’s for sure. I’m in vm recovery...whatever that is, I have suffered with forgetfulness/brain fog and headaches since January this year, I had the flu was told it was a virus, then took to bed foy days with blinding headaches and couldn’t stand light or noise, got admitted to hospital still none the wiser thought it was a migraine, some three or four days later sent home and told to rest ! I would be better in about 10 days, I now know that’s not true, everyone on here gave me great advice I thought I was going mad, why was I not better, why cant I spin plates and why do I have this brain fog, why isn’t there a magic pill. Simply there isn’t your wife just needs to rest and let her body heal, sleep when her body tells her too, be kind to herself, learn to listen to her inner self. It’s frustrating but I have listened I returned to work on a part time basis, slowly increasing hours but when I feel I am reaching shut down I leave early and sleep or just rest, these are alien steps for me, I am 41 and have a 7 yr old I have also learnt if I don’t stop and rest I will prolong my recovery And that impacts my daughter too. It’s been an eye opening journey and thankful for this forum, I hope you and your wife get some clarity. All the best

[Phileas in reply to Lozza_j]

Thanks Lozza_j for your reply and experience. My wife's symptoms seem very similar to yours, she also had/has cellulitis, swollen nymph nodes and tinnitus. The cellulitis pretty much cleared up although she was complaining again this morning about it in her foot. But her tinnitus and swollen glands were the biggest concern which made me question if the doctors had found out what was wrong with her. Her tinnitus is terrible though she says and the pain she gets from swollen glands in her neck is getting her down. She is still getting headaches but no where near as severe as before. She also says she gets a weird pain behind her eye now and then.

I am glad you are on your road to recovery and hope you get well soon, we have a 7 old too plus 2 older kids so we know how hard it can be with a child.

Best of luck and thank you.

[Jonad724]

I had near fatal VM in 2002 so I hope I have some experience which can be of help. It is possible for it to be probable VM as unless the lumbar puncture is done within a few days of the initial infection it may not show up. The medical profession is told in training that VM is never serious and clears up within a couple of weeks which of course many people in this group know is not true in all cases. Most GPs will never see a case of VM so it isn't that easy for them to diagnose in some cases because the presenting symptoms don't always point to a single illness as your wife has discovered. I'm puzzled as to why she has been referred to an ENT specialist though as I would have thought it would be a neurologist? It might be worth querying this with the person who made the referral. You'd be surprised how little the medical professions knows about brain infections and the after effects so quite a bit of it, in my experience, is based on guesswork, educated guesswork possibly, but guesswork nonetheless.

In practice there's not much more that doctors can do if your wife is recovering from VM, the only solution is rest, rest and more rest and when she feels better, then she needs to rest some more. If it was VM then the brain has been subjected to a trauma and this can have various after effects including tinnitus which i have been left with. I also have metabolism changes which have resulted in developing intolerances to alcohol, caffeine and cocoa so what follows VM may not make any sense to the sufferer or the medical profession.

I am now a Meningitis Now volunteer Community Ambassador so if I can help at all please do send me a direct message. Good luck and I hope you and your wife are able to get some answers.

[Phileas in reply to Jonad724]

Thanks jonad724 for explaining, it certainly makes more sense now.

When my wife left the hospital nearly 2 weeks ago, she was still not well with swollen neck glands and tinnitus. The doctor said the inflammation in her blood stream had dropped and they found nothing in all the tests they did apart from a small lesion on the brain which was not a big concern. When I asked about meningitis I was never told clearly whether she had it or not, some doctors had said tests came back negative but that was all they said and other doctors said they think she had VM but not sure. Anyway, from what saying now, this now makes sense. Thanks.

I have read articles in the past about GPs only using guesswork based on symptoms and that they can never know properly until tests have been done, even the staff nurse told me the same in the A+E! So, now of course it questions whether or not should I spend money on a GP now

The reason for the ENT maybe because of the severe tinnitus and the swollen nymph nodes, however in her medical records it will also show she had vertigo issues which the GP put her on medication for around 1 year ago. And, maybe think it could be related.

I think my main question to you would be about the symptoms she is still having, it makes me worry that there is something else wrong with her even though she has been through so many tests during a 12 night stay in hospital. I think most of this stress could of been preventable if the doctors had explained that it could be a long road to recovery and that she would have some symptoms that may not go away for some time. I mean, the swollen nymph nodes and headaches, is this possible still after having VM and the tinnitus. She also has all a lot of tiredness too.

Thanks, I hope the symptoms are normal for post VM, so I can stopping stressing it could be something else. Thanks again and glad you are recovering well.

[Jonad724 in reply to Phileas]

I'm not sure about swollen lymph nodes but it would make sense as these are related to the immune system and it does take one heck of a battering with VM. Headache and tiredness are very common after VM, tinnitus is what I have also been left with so it is possible. Basically the brain has had a traumatic episode if it was VM and therefore the after effects can be unpredictable however if you can arrange for her to see a neurologist then please do for peace of mind. The medical profession rarely tell anyone that the road to recovery from VM can be a long and drawn out process but as you can see anecdotally from this site it can be. Medical professionals are taught in training (I deliver projects for the NHS so I get to canvass opinion a lot) that all types of meningitis are the same recovery wise except they are also told that VM is never more serious than flu with a similar recovery time. There is light at the end of the tunnel though but it takes patience I'm afraid and you can expect your wife to have good days and bad days for a while to come. It's not until you go through something like this that you realise just how little the medical profession knows about brain illnesses. Please do feel free to contact me or reply here as many times as you need, I'm always happy to help.

[Phileas in reply to Jonad724]

Hi Again,

Thanks, that is good to know about the after affects. She also has a little cough now and then too I have noticed. She has already had an MRI, I am not if a neurologist what looked at that already but I ask doctor on next visit about it. No harm in visiting the ENT specialist I suppose at least then can rule out anything there.

Once thanks for your help, if I have any more questions I will drop you a message thanks again.

[Phileas in reply to Jonad724]

Hi again,

My was taken back into hospital yesterday, and put back on antibiotics. Many of the symptoms came back late last night. No where near as bad, but thought taking no chances. They are keeping her in to do more checks I presume. Ambulance crew said it is not meningitis if she has been sick so long! Stressed again.

[Jonad724 in reply to Phileas]

Sorry to hear that, viral meningitis can make you feel il for a long time which just shows that the medical and paramedic world needs educating. I was off work for nearly 6 months and only went back because my salary had been halved. I wasn’t ready as everyone kept telling me. Please do ask them to do a lumber puncture in case it is VM. If they refuse ask them how many cases of VM they have treated or diagnosed and if it’s none then you are well within your rights to tell them the experiences of people in this group. If they want some first hand experience I can PM you my phone number and they can ring me and I’ll tell them. Alternatively if you’re in the UK get them to phone the Meningitis Now helpline 0808 80 10 388. Thoughts and prayers are with you and your wife.

[Phileas in reply to Jonad724]

Hi Again,

My wife had 2 lumbar punctures on last visit but they were never clear about results, I had different answers from different doctors and all of them would not confirm even then, it was always "most likely" or "probably". Even the notes for GP said "Probably VM". Just phoned the A+E and she waiting for a bed in ward, btw I live in Ireland but I am British and my wife is Cambodian. I have tried talking to different doctors, but of course they know best, they will not entertain my thoughts of on it. The A+E doctor also called me 4am this morning, and asked what were her symptoms and what did they test for before!! Surely, all the info is kept on file and it would be quicker for them to check, altho saying that, different doctors from different depts and hospital checked for different things.

BTW, do they always get a positive result on VM lumbar puncture test if someone has it? I was told there are different types of VM.

Thanks again.

[Jonad724 in reply to Phileas]

There are different causes of VM but as far as I know VM has the same basic symptoms of fluid in the meninges (the cavities surround the brain) which causes the headache and illness. The lumbar puncture checks for the presence of a virus in the cerebral spinal fluid which is I think an indicator of VM if the other symptoms are present. I'm not a doctor so I can't say for sure but from experience and from what other people have said a positive lumbar puncture for VM is the diagnosis. When dealing with medical staff I always use Newton's third law of equal and opposite motion. If you go at them like a bull at gate that's how they will react but you can say things to them like 'I'm sure you've seen hundreds of cases of VM/these types of symptoms in your time' and watch their reaction, you'll know if they haven't I can assure you. The one approach that always works (I work with clinicians day in day out rescuing projects for the NHS as a freelance project manager) is can I ask for your advice please. Then you can progress with your questions.

With medical records, I know in the NHS records are held on the NHS spine but even then it's not fool proof and a busy A&E doctor will always use the easiest route to get the info in fairness to them.

If there isn't a positive lumbar puncture it could be that the virus has been and gone but the after effects last a long time without it being there so hence the probably and maybe in the diagnosis.

If the Newton's third law doesn't work and you feel you are getting nowhere, mention that you're thinking of making an appointment to see the medical director, that usually does the trick because you're not happy with the progress/treatment so far. You will be able to do this, best to find out their name first by googling the hospital and medical director, but you may need to a bit of perseverance. It's worth it because it takes the wind out the doctor's sails especially if you say the medical director's name rather than just the 'medical director'.

Keep us posted and please hang in there.

[Phileas in reply to Jonad724]

Hi Again,

My wife is back hospital now, but now they think it may not be meningitis after all, however they have not ruled it out. The problem is the swollen nymph nodes and other symptoms she has make them think maybe something else. Now she is been transferred to a bigger hospital for a biopsy now in an infectious disease specialist dpt. I will keep you updated.

Thanks

[Jonad724 in reply to Phileas]

At least she’s getting the right care now, fingers crossed for you and I hope all will be fine soon. Please do keep us posted.

[Phileas in reply to Jonad724]

We have had a confirmed diagnosis now or at least they say 99% confirmed lol. My wife has been confirmed with TB meningitis so now it the long process of getting rid of the TB begins. At least now we know what it is, at least some relief. Thanks for your help.

[Jonad724 in reply to Phileas]

Well at least you have a diagnosis now and the recovery can start, fingers crossed for her and hang in there, always happy to help :-).

[Mummylife]

My daughter's had it shes 5 after coming out hospitals had to go to ent bit took 5 weeks had to go back 3 months (was discharged in nov) after to main consultant to check her recovery still gets tired quick may be very dossey some days (normaly very active b4 thi) no app made got a tx telling me ot will be tomorrow at 2 in a hospital over an hr away from me. Called to ask if could be moved a bit later in day as i dont drive and will need hubby to take me and help distract her for bloods. Man clicked on wrong button cancled app. Cant rebook her till end of april even tho i told them that she still drousy and complain of headaches even tho eye test been done. There amswer was oh well coz app cancled slot gets automaticly filled so need to wait. The hospital was amazing when she was there but followow up is rubbish. I looked on line for most info and will call them daly to c if i can get another slot. Good luck. glad shes on the mend if u have concerns ring them they may just have her on bottom of pilex

[Lippistix]

Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

[Phileas in reply to Lippistix]

Thanks. My wife is back in hospital and they are still not sure what the problem is so we will wait and see. Thanks for the advice.