Could lumber puncture miss the virus causing VM?

[Turner16]

Hi, just discovered this site....thankfully.

I got out of hospital 5 days ago, after spending 8 days there. I was admitted with horrendous head pain, sick feeling etc. I have previously had 2 diagnosed episodes of VM and one further episode which was diagnosed as stress( I am pretty certain it was VM as symptoms,duration,recovery etc were identical. ) This time they did scans,x-Rays, lumber puncture etc and said that they were all- clear except blocked sinuses. The pain was horrific and identical to previous episodes. I was treated with Tramadol and Morphine.

The previous diagnoses identified Herpes Simplex virus as causing my VM. I am currently (and have been for 3 months) on a suppressant dose of Valycyclovir for Herpes virus and , what I wondered is, could this have caused the lumbar puncture to miss the virus? The doctor at hospital was very vague and non-committal when I asked this. Any thoughts anyone? Thanks.

[StrawberryCream]

Have a look at the posts of Jonad724. He has Mollarets which is when you get repeated episodes of the symptoms viral meningitis but I think I am right in saying that it doesn't show anything in lumber puncture results. It is very rare and even many specialists haven't heard of it. A recent post was about this as well so do take a look and search others on here relating to Mollarets.

[Turner16 in reply to StrawberryCream]

Hi. Thanks so much for that. I'm off to look it up now.

[Jonad724]

As StrawberryCream says (Hi StrawberryCream btw 😊) I was diagnosed with Mollaret's 5 years ago and this is a 'ghost' version of VM in that it replicates all the symptoms but you don't actually have VM again. It is, as StrawberryCream said, very rare but it is only found, as far as I'm aware, after VM and usually serious cases of the illness. There's very little research into to it so there is consequently very little information. My particular 'brand' of VM 13 years ago was nearly fatal, within 10 minutes of calling my family back in from home to say goodbye, and was caused by herpes zoster or chickenpox in other words. As Mollaret's isn't a recurrence of the actual illness nothing will show up on the lumbar puncture, I was fortunate enough to have an eminent neurologist who knew what was wrong and so didn't have to have anymore LPs than I did when I was first ill. The possible reason that the doctors were vague and non committal is because they probably don't know what to tell you and rather than say they don't know they waffle or give you a vague answer. There is a misconception that the medical profession knows more about the human body than they actually do and this becomes acutely apparent when you have VM. In training they are told this is no worse than flu, always. There are many people on this site who can testify that this is hogwash which is why it can often be misdiagnosed if serious symptoms are being presented. It's interesting that one of the diagnoses was for stress when you were in the middle of an attack because I worked out about 3 years ago that it's stress that triggers my Mollaret's attacks. It might be worth keeping a record of your days in terms of stress levels between 1-10 just by writing a number in a diary or in Outlook for example, for each day showing the levels of stress you experienced or are experiencing that day. Then if you have an attack you can see whether it was a stressful day or days before the attack. If the doctors have never heard of Mollaret's, and my GP told me it was so rare I couldn't possibly have it, they will try and diagnose you with something just so you have a diagnosis but to me, and I'm not a medical person so it's just my opinion, blocked sinuses wouldn't require tramadol and morphine even though they are very painful. So as StrawberryCream says have a look at Mollaret's as a suggestion to the docs and it may be less rare than thought as it could be down to misdiagnosis. Good luck and keep us posted . Jonathan

[Turner16 in reply to Jonad724]

Hi. I've had a good look at all information that I can about Mollarets and it really resonates with me.

Also, your point about stress being a factor seems pertinent. I'm seeing my gp this week as I'm still feeling really fatigued/weak/pain in head when bending forward etc so I will air my suggestion re Mollarets and see what response I get.

Thanks to you and to Strawberry Cream for responding. I did feel extremely isolated and your replies have helped such a lot.

[Jonad724 in reply to Turner16]

You're very welcome, feel free to PM me if that helps too and also I write a blog on here about my experiences of VM which I hope might help too, just click on my user name and it should take you to them. The key thing is that VM can be very isolating because no one around you knows what's happening and by and large you look ok so nobody actually remembers how ill you have been or are. Hang in there, you are not alone

[Turner16 in reply to Jonad724]

Oh my goodness, that's exactly how I feel. I've been out of hospital for a week and I've only just managed to go outside for the first time today. I'm amazed that I'm experiencing loads of after effects. I'm usually a very fit and active person so it's hitting me hard.

Again, thanks, I appreciate you taking the time to reply. I ll read all I can as I'm sure it will help.

[SilverCharm]

Just a note on Lumbar Puncture (Spinal Tap). It does not diagnose meningitis. It just measures the pressure you are experiencing which indicates that you might have meningitis. emedicine.medscape.com/arti...

They also measure the number of white cells in your fluid. Anything more than like 15 or 17 suggests meningitis. When I went to ER on December 23, 2012, with the "worst headache of my life", my LP showed a pressure of something like 49cm and white cell count was 17. The tube they used to measure only went to 50. But the doctors never could figure out which meningitis I had, so i was stuck with a diagnosis of aseptic meningitis (Bacterial, bacteria unknown because I responded to the antibiotics so well). As they admitted me, In about 15 minutes, I went from a low grade 99 fever to a 105 fever. Fortunately for me, they were pumping me full of antibiotics as I spiked that fever.

[Turner16 in reply to SilverCharm]

I'm so glad I found this forum. All this info is so enlightening. Many thanks.