Negative Test Results

[Petratouromeou]

If the MRI and LP don’t show meningitis can it still be there? Are there more in-depth analysis of the fluid collected during the LP that could be done? I am in hospital now Day 10, I have many of the the symptoms but tests are clear. They don’t know what to do with me. I can’t function standing for more than 10 mins at a time, let alone drive. I’m so swollen around the neck and ears. They’re pumping me with hydrocortisone and now trying painkillers IV. Any suggestions for more detailed testing they might routinely do here in Cyprus? Thank you for your time.

[dy1ng]

Hi, I did a MRI, LP, and frequent blood tests. No results were found but based off my symptoms, doctors concluded that I had viral meningitis which went away on it's own. Initially, they treated me with antibiotics, speculating that I had the bacterial version.

I hope you are doing well right now.

[Petratouromeou in reply to dy1ng]

Thank you. Do you mind telling me which country and hospital you were in? I ended up in hospital 19 days in total. So many scans I dread to think of all the radiation. I am now slowly getting better. I can walk the dogs for 20 minutes, stand for about an hour and sit for about 3 hours but afterwards I need to lie down as the ‘headache’ and weakness kick in. The ear is still blocked and feels swollen around it but much less so and I am definitely improving but it is frustratingly slow and limiting. The osteopath once a week definitely shifts things around and feels worse at first but then better ... thanks again with your reply, thought I was going bonkers.

[Jeffthe]

Did you ever have any improvement?

Why can’t you stand more than 10 minutes? What is the symptoms that cause you to stop standing?

[Petratouromeou in reply to Jeffthe]

Hi, After 19 days in hospital I am now home and improving but it is such a slow process I’ve never known anything like it. In answer to your question, when I sit or stand for too long the pain in my head, neck and ears worsens when I lie down it all but goes away. Before I was admitted I just kept on needing to lean my head on something and I was very photophobic, that has all but gone now. I am seeing an osteopath once a week and although it is uncomfortable it is definitely shifting things out. It’s useful too because he and I can gauge exactly how different and better I am feeling with each week that passes. Thanks for your reply.

[Jeffthe]

I am super suspect of diagnosis of VM without diagnostic evidence of the virus.

Especially if you have positional symptoms- better laying that standing.

I had a very similar situation to you. Diagnosed with VM. Symptoms got better over times but I was never the same as before until I developed a subdural hematoma.

I had seen two nuerologists, infectious disease specialists, internists etc.

After the subdural I met was medivaced for a crainiotomy. When the surgeon took my history he said you have a spinal fluid leak. Most of the doctors had never heard of it. Studies show this condition will not be diagnosed in an ED or a family doctors office.

I had treatment and it changed my view of medicine entirely (I work in healthcare)

My experience was utterly horrible and I don’t want other go through it. My leak was spontaneous- caused by a tiny calcified bone rubbing against my dura. It made a hole, I leaked CSF which caused my brain to sag and created crainial nerve palsies.

If you are suspected of VM but you have positional symptoms ask to be cleared of a leak. Look over the information and symptoms on spinalcsfleak.org/about-spi...

It might be very difficult to get your doctor to take this seriously - which is also a common thing leakers report. Physicians are aware of CSF leaks - but usually from surgery or a needle tear from an LP. They are very unaware of spontaneous leaks.

Others diagnostic clues would be pachymeningeal enhancement on an MRI, brain sag on an MRI or CT, extra dural fluid collections on an MRI. There are lots of tests to confirm a leak.

I actually got a lot of relief and I think I healed the tear with one week strict bed rest (on my back). Unfortunately it retore because of the bone fragment. Most people just need bed rest or an epidural blood patch or fibrin glue patches.

I read these stories on here about VM and I see such an overlap with the spinal CSF leak symptoms and my story, it scares me - especially in how little they know about it.

I learned to be very respectful but extremely tenacious about tests and information with the physicians. The best advice I ever got was to talk to the doctors about yourself as though you were advocating for your own child.

Anyway - best of luck to you. I hope you heal soon. If you do end up need any more information, feel free to message me anytime. I know what you are going through.

[Petratouromeou in reply to Jeffthe]

Hello again, thanks for your long and very useful reply. I thought of the ‘leak’ week’s ago but it was dismissed because my pressure on the LP was slightly high (21) and not low. Also they did 2 MRI’s one of my brain and the other spine. They said it was all fine. I didn’t have any surgery or LP before this problem started but during a CT last year of my abdomen they commented in the report that I had T9 and T10 spurs. Not sure who to go to next for a leak check?! It is just such a pain having to convince these guys to be more open minded and thorough. I wish I had a medical degree and didn’t need to rely on their insufficient diagnosis. Thank you again. I’m sorry you had such a frightening experience. I’m glad you are so much better now. I may go for a second opinion , privately, to a new neurosurgeon.