Post viral menigitis or something else?

[Glitterwobbles]

Hi just wanted to say hello. I was admitted to hospital mid march with headache neck pain and photophobia. My bloods showed high inflammatory markers.

I was treated with antibiotics and acyclovir for suspected menigitis. 2 lumbar punctures were attempted but no fluid obtained. A mri of my brain showed inflamation.

I was discharged after 14 days and told I would be better after a week.

It's now 2 months and although I'm much improved I am far from better.

I am still experiencing decreased sensation in my face,tingling sensations sometimes like shocks in my neck and shoulders,Lower back stiffness, general muscle weakness, burning sensation in right thigh fatigue and anxiety.

I had an mri of my neck as an outpatient which showed cervical spondylosis and disc protrusion. I also sadly lost my Mum.

I now dont know what is causing my symptoms is it because of the ? Menigitis or is something else going on.

I had been experiencing the burning sensation in my thigh and morning stiffness for over a year.

Awaiting appointment with neurologist to discuss last mri of brain. Worried about result. Also concerned will be fobbed off. Had traumatic time in hospital with delays getting scans and having trouble discussing anything with GP as they didn't request it.

[Jonad724]

I am now19 years since near fatal VM so I hope my experience can help. What you experienced in hospital and the advice from the doctors is not unusual. Doctors are taught that VM is never more serious than flu and that you will recover in 2-3 weeks at the most.

Unfortunately most doctors never get to see a case of VM and therefore rely on their knowledge and what they read rather than listen to the patient. Recovery from VM can, I'm afraid, take time and two months in from an attack is really not much time at all. The key to successful recovery is rest which is tough for a lot of people with busy lives and especially when you have a doctor telling you, as they did with me, that I was better.

Stress also can slow down recovery and it looks like you've had this in spades with everything that has gone on and also with your tragic loss on top, you are without doubt having a really tough time of it but you are most certainly not alone. There is a whole community of people on here who have had VM and understand the struggles to understand the conflicting information and also the fear of being fobbed off by a medical profession tied up in its own professional mystique.

Things I found which help when dealing with dismissive doctors are:

1. Asking them how many cases of viral meningitis they have treated, how serious were they and how long did the patient take to recover. if they haven't treated anybody with VM before they will try to duck this one with phrases like 'well all meningitis is the same' but be persistent and stick to the question.

2. Ask them if they know any survivors of VM and have they talked about their recovery story to them? If not then please send me a message on here and I will happily talk to them about it. I work in the NHS, in a non-clinical role, so I'm used to dealing with doctors.

3. Remember you are the patient and you do have the right to ask to see a medical professional with experience in treating VM, you don't have to put up with the first consultant or registrar that you see if they try to fob you off. Doctors are not always keen on admitting they don't know what's wrong or that they haven't treated an illness before.

I do really understand the worry about the MRI and bear in mind that science knows about 15% of how the brain works so it is possible that it doesn't show anything however if you are feeling the after effects, and loads of people on here know what that's like, then keep going.

I am also privileged to be a volunteer community ambassador for Meningitis Now so if I can help at all please send me a message on here as I can offer peer support via the charity.

Good luck and again so sorry for the loss of your Mum. Jonathan

[Glitterwobbles in reply to Jonad724]

Hi Johnathon .Thankyou for your reply. I had a telephone appointment with my neurologist. The good news is that the MRI of my brain showed that the inflamation has resolved. He described its radiological resolution of menigitis. That does demonstrate some understanding of the fact that many of us have a long road to recovery.

However the MRI of my cervical spine shows that I have cervical myelopathy so have been referred to a spinal surgeon. Apparently there is a 46 week wait to be seen.

I am now caught in the situation that no one knows if my symptoms are due to menigitis or myelopathy. I feel that it's a case of keep taking the gabapentin and get on with life.

My mental health has hit rock bottom and I am struggling to find my way out of constant worry.