My Story

[PeterrB]

In late December 2018 during the weekend everything seemed to be going smoothly.

I was actually out with the lads having a few beers.

I remember starting not feeling to great but kept pushing through it. At the time I thought it was just dehydration from a few to many drinks.

I remember waking up on Sunday feeling completely out of it.

Nearly everyone knows what a hangover is like.

This was different. I felt like I wasn't in my body. But I kept pushing through it thinking it would pass.

Come the following Wednesday I was at work when this horrible feeling came over me. My heart dropped and I started to feel extremely Ill.

As a few weeks went past my condition wasn't Improving. I was feeling more out of it than before.

It was 1 week after new years on a Friday. I finished up from gym (I'm a gym junky and had some goals I was aiming for. Regretting I Probably should of backed off).

Going Into gym I was already feeling extremely weak and out of it. Best way to describe it was feeling not my self. Something wasnt right. Unfortunately that was the tipping point that night. As I left the gym I felt weak at the legs, the world was spinning, uncoordination in my limbs. I believe I was cognitively Impaired too because I was making silly decisions like continuing to train.

I was rushed to ER. Did basic blood tests. All came back OK. Long story short I was released. the docs thought I was just having a panic attack. But I know what they feel like. I've had them in my life and have been symptom free for many many years and it wasn't from mental Illness. It was from substance abuse. This was completely different.

The physical symptoms manifested into anxiety. I was in a fight flight response because my body was literally in distress.

I was told to go home and rest. I was ln bed for 2 weeks with heart palpitations. Felt like my whole body was vibrating and felt like I was dying. I think I was in and out of consciousness. I actually don't have any memory recall of those few weeks.

Reading through stories on here I am almost 100% certain I have/had a form of meningitis. (Possibly after effects of it now since it's been awhile).

I would say the 3 worst things I'm dealing with still is anxiety/depression, neck stiffness/ head pressure/headaches and fatigue.

The anxiety is actually through the roof. I get panic attacks if I go out of my house now. I'm an extrovert and didn't have a single issue with social anxiety or any kind of anxiety I general. but since this has all happened all I want to do is sit in a dark room In silence. Social life and work has been dramatically affected.

Other symptoms are: blurred vision, memory problems, muscle twitches, tremors and strange neuropsychological manifestations.

I'm also unable to exercise. My head thumps whenever I do anything that raises my heart rate. Feel very faint and lightheaded.

I've put this down to some kind of blood pressure regulation problem with my nervous system. This has Improved though, which gives me hope.

To be optimistic and positive, looking back to how I was at my worse there has been remarkable Improvement. But I'm not where near functional.

I have a neurologist booked now..but I feel like it might be a waste of time. I was looking for a diagnosis but have read similar stories to mine where there was never a diagnosis made because of the late timing..I don't see the point In doing a lumbar puncture.. It might be good to rule out anything else though.

I'm confused and would like some guidance and definitely some reassurance.

Peter

[Barbaustralia]

A lumbar puncture may only give a result when symptoms so might have had it but may come up Negative and it's painful I'd say neurologist waste of time and money but having an MRI is important to rule out brain tumours etc

It's horrid and I'm social too but now dark room is where I spend most of my time

It's only 3 months for you and I improved after 5 months and Acupunctur helped

I also had high blood pressure

Take care

Barb

[Hidden]

This is quite odd. Peter, when you say your blood was OK, is that what the ER doc told you? Were you able to independently verify this?

When I read "gym junky" and "dehydration," I immediately think rhabdomyolysis. I don't know if this accompanies all cases of meningitis but it did mine, both the bacterial and viral bouts (no, I'm not a gym junky, but I was "exercising" past my endurance point). Your CPK, GRF and other kidney enzymes were OK?

Nothing was normal in my basic blood work. Nothing. From the WBC/RBC to to electrolytes, everything was cattywampus (sp.?) (I don't know if this is typical for meningitis; maybe I should post about it.)

I trust doctors about as much as I trust Nigerian princes, but I agree with Barb: An MRI, of both head and spine, will shed light on your horror. At least I *think* that's what Barb suggested; my brain doesn't work very well, lol.

Panic attacks: Yeah, that's what doctors said when I first began developing MS symptoms in the late 80s. I *knew* panic attacks and what I was experiencing wasn't that.

Substance abuse: No, I'm not getting into abuse, just substances. I experimented with drugs as a teenager. I no longer know anyone who has tried mescaline or acid, but many of my sensory distortions feel like hallucinogenic experiences. Tried several strains of pot after it became legal in my state but before the meningitis, after folks said it would do wonders for MS and CA-- the same uncomfortable sensations, the wa-wa in my ears, the hot eyes and extreme photosensitivity, the sensation of losing time, etc., everything I've experienced with meningitis.

Anyways...you've suffered too long without a diagnosis. Please be a strident advocate for yourself. Hoping you get both answers and relief.

[Rowi]

This sounds similar to my experience. They ran basic lab tests. And I was dismissed and sent back to work, even though things just kept getting worse and worse for me...until I could no longer function, even with the most basic things. They also told me it was anxiety. Finally, five months later, I found a good neurologist who was sure it was meningitis. But she said that since I was showing slow signs of improvement, she did not want to take the risk of doing a lumbar puncture, and as Barbaustralia says below, she thought it would not necessarily tell us anything anyway since five months had past. They did do an MRI (without contrast) a couple of months in, but it was normal.

[Rowi]

P.S. In my case, I felt it was helpful to go to the neurologist even though five months had passed because I finally got a diagnosis and someone who wasn't chalking everything up to anxiety and depression. And she gave me some helpful information and answered a lot of my questions. If this just happened in late December, you need a lot more time to heal. A lot of what you're feeling will pass, but ideally you probably shouldn't work. I had zero social life for a long time, but I asked people over for tea...and I asked people for help. That way I did have social contact. I asked people to turn their phone off when they came over, because I couldn't stand a single ping or ring or song.

[PeterrB]

Thanks for the replies everyone.

One thing I can't relate to is photophobia. I don't have it. Or if I do it's extremely mild. Outside I'm ok. If I'm watching a movie and there's pulsing flashes in a action movie for example that can make me disoriented. Is this the same thing?

Talking makes me feel sick and fatigued as soon as I open my mouth. How long does that take to go away?

I have always been In control. I have worked out that is my anxiety trigger.

When I go outside. Where there's noise and commotion and everything is fast I can't control these terrible symptoms.

Some further information:

What came up in my blood tests 'POST ER' when I saw my internist was influenza A+B in my antibodies tests. I'm not sure if it's possible to contract both at once. Doc was saying it was most like A.

Thyroid was underactive. Liver enzymes weren't high but they were elevated.

All from the flu and or meningitis.

I saw him last Wednesday and I was an absolute wreck. That's when he referred a neurologist for me. I could see he was referring one for me for 'peace of mind'. He already said to me the first time i came to see him he suspects this is a 'meninges infection'.

Thyroid is out of wack, liver not working 100% and my lining of my brain/spinal cord is infected. WOOHOO.

You can see how things can compile and exacerbate symptoms.

I have a extremely sort after internist in Melbourne Australia. If anyone wants his details please PM me. (I'm serious he's A++++).

[PeterrB]

PS does anyone get shortness of breath through out the day?

[rohitcontra in reply to PeterrB]

I am 1 year post vm. I still feel shortness of breath. Also fatigue, muscle pain, neck pain, weakness, memory issues (difficulty in finding words or name), difficulty to process information when i am outside like public place etc.

I have become introvert. I meet only a few people (before vm i was quite social). Lost interest in FOOD. Problem in liver etc.

When it started a year ago i had very fast heart beat and very very high anxiety . Extreme pain in neck, pain in limbs. Disbalanced walking. Nausea, and i was always sleeping. A sign of stress and i had to take a lot of rest. Was not able to work in office. And was in pain from every possible aspect.

And the issue is doctors take this very lightly and never give a satisfactory explanation.

A single bout of vm can ruin many years. And i am not sure whether i will be same as i was before contracting vm.

[OlamanaMartel in reply to PeterrB]

I had pneumonia, and yes I have been ill since v/ m a year ago sept, and still have spells of shortness of breath, sometimes just walking across the room, or up the stairs. I believe I have recurring meningitis, or Mollarets meningitis. After I was released from hospital my partner and I had mono as well, so it has been a sick couple years, I’m ready to be well any day. Neurologist apt, soon, intending help from him. Very thorough and been to him before for mini blackouts during the day. Discovered I have an active brain and only 80% oxygen when I sleep. Much better on cpap.

[Hidden]

You've got a lot going on. Please make sure your doctors know you're a "gym junky." (If your urine is discolored, that's really important to mention.) And make sure you note each and every sensory disturbance/distortion. Jot down notes if necessary.