Viral meningitis last month

[MrsMagu]

Last month, July 2020, I was diagnosed with viral meningitis after being misdiagnosed with covid (by two different md). So it went on for about 11 days before being diagnosed at the tail end of it. Now, a month later I am still having grogginess and eye spots, major fatigue. Several other lingering symptoms too. I am going back for a follow up visit in a few days and I wondered if anyone could tell me some good questions to ask? It’s all very overwhelming and I don’t know what to ask. Thank you.

[Fiona-bennet]

I had bacterial meningitis in 2016 and I still have pain, vision loss, blind spots, photophobia, ear pain and problems (mine turned into mastoiditis) because of the delay it took to start being treated it may have an affect on how you recover but I don’t have experience with viral meningitis and I had many complications with mine too. Ask them all the questions you think of leading up to it and write them down. Anytime something happens that used to not happen write it down. Be very specific when discussing something that has occurred because it may help with working it out

[MrsMagu in reply to Fiona-bennet]

Thank you for your response. I ended up going to the emergency room last night with a headache and fever of 102 (38.9) but since I didn’t have a stiff neck at the moment they didn’t do a lumbar puncture and just gave me Tylenol and dismissed me a few hours later once the fever was down. I will be writing everything down for when I see my primary doctor on Monday.

[Fiona-bennet in reply to MrsMagu]

Omg 🤦‍♀️ you don’t even need the stiff neck it’s just a common symptom. I never had one

[MrsMagu in reply to Fiona-bennet]

I didn’t know that you didn’t have to have a stiff neck. Good info! Thank you.

[Mimilondon]

Just tell them everything as I am not the same and it’s token months to get heard. One thing they said to me was plenty of rest which I didn’t as we went into lockdown and I have children to look after.

I am now having tests done so hopefully will get to the bottom of this.

Good luck

[MrsMagu in reply to Mimilondon]

I’m in the same boat with rest. Stuck at home with 3 kids under 6. Luckily my husband has taken some time off work to help but I’m still doing a fair bit of childcare.

I hope you get answers soon!

[Jonad724]

The best advice I can give you, speaking as a survivor of near fatal VM is to ask the doctor how many patients with VM they have treated. Don't be fobbed off by 'meningitis is all the same' or 'VM is no worse than flu' if they have never treated anyone with VM they will think it's a mild disease and you should be better now.

Chances are, they have never treated anyone with VM and I had to argue with my doctor at a time when I just wanted to sleep but he wanted to send me back to work and told me I was malingering. Once you have established if they have not (and I would put money on it) then ask them to treat you more seriously because VM is not always a mild disease and very few, if any, people are better in 2-3 weeks which is what doctors are told in training.

I'm a volunteer community ambassador for Meningitis Now so if I can help further please just PM me. Good luck, Jonathan

[MrsMagu in reply to Jonad724]

Thank you. My primary did say he saw it once when he came in the little room and his patient was curled up crying on the floor. He is stumped over why I am still having symptoms and referred me to a specialist of some sort. I really appreciate your answer.

[Topmanhughes in reply to Jonad724]

Hi There,

My wife has fever,headache,vomiting and light sensitive so I took her to hospital but doctor didn’t found anything . Her all report at normal like lumbar test , MRI ,blood test but still doctor told us it could be TB meningitis so they run TB medication but after 3 days of medicine my wife lose her balance and she told me everything around her spinning so we told doctor about this . But doctor also telling us what it happening they don’t know.

And I am bit of doubt is that because of medicine side effect she has got 24 hour room spinning problem ,some time she feel less spinning difficult to Walk coz of spinningas well as she told me she has blur and cloudy vision. If you have any idea about it please share to me Thanks. Not only this they are going to do MRI again on Monday and they told me they are going to refer ENT I don’t know it will help or not. some body told me about your place so I just made enquire can you have any suggestions please let me know.Thanks

[Jonad724 in reply to Topmanhughes]

Not sure I can be of use here but if you are in the UK please give the Meningitis Now nurse led helpline a call on 0808 80 10 388 and they I am sure will be able to advise.

[Amw41]

I hate to be the bearer of bad news. Expect several months of lingering effects and possible chronic fatigue. Then one day you will wake and it will be better. So hang in there and just take hour by hour. Day by day. It will get better slowly.

[MrsMagu in reply to Amw41]

What do you do in the meantime though? I’m a stay at home mom to 3 young kids that I can’t physically care for without needing multiple naps throughout the day. My husband luckily has a few weeks off with pay to help but what next? I’m terrified of what’s coming in the next few months.

[Amw41 in reply to MrsMagu]

Sorry but with viral illnesses there’s not much you can do until it runs it’s course. Nap small and often. Warm baths for joints. Healthy food and try and keep moving as it helps. Apart from that I can’t offer more advice. BTW. I’ve had it a few times but each bout it was less recovery.

[MrsMagu]

Did anybody have fever that came and went? I’ve had fever over 101 (38.3) almost every day for 2 weeks.

[KayKaytheRam in reply to MrsMagu]

Yes I had migraines for two months, some so severe I had 7 lumbar punctures in my back and one in my neck to relieve the pressure off my brain 🧠. Best advice I can give is to stay informed with your body changes and advise your Dr. accordingly. I was hospitalized for 3 months and suddenly woke up completely fine. Sending you comfort and healing vibes.

[JLJB]

I also had a prolonged fever and that is one contributing factor to hair loss. I lost more than half of my hair. I tell you this so if you start losing your hair you won't freak out. I contracted VM the end of May 2019 and started losing hair in August. (It started growing back by November, but I now have much curlier hair). Also, my primary physician seemed to know little about VM. I made a follow-up appointment with him after I was released from rehab as I had been instructed. I was in the hospital and then rehab all of June and half of July, yet he looked at me quizzically and asked why I was there to see him. I had many lingering problems, but I just said "To refer me to a neurologist," which is what he did.

[SarahR100]

Salus offer a range of information to help with coping with fatigue post viral infection salus.org.uk/education/

Meningitis Now have a factsheet about viral meningitis, which might help you to understand more about what is happening to your body meningitisnow.org/how-we-he...

Both are UK based, but their web information is available to anyone around the world.

You could consider alternative medicines to see if they help with coping with your after effects. They don't work for everyone but some say that they do.

acupuncture.org.uk/public-c...

acupuncture.org.uk/a-to-z-o....

craniosacral.co.uk/about-us...

youtube.com/watch?v=uql394t...(Not working as expected?)

[Veba in reply to SarahR100]

It's the worst. More needs to be studied in this field. It has ruined my life for sure. All the best and glad you're feeling better.

[MrsMagu]

Thank you all so much for the info. It means a lot to me. Something new is going on. I guess after the viral meningitis my immune system was so low that a new bacteria snuck in some how. I was admitted to the hospital 9 days ago, I have a 1.5 cm vegetation growing on my heart and a piece flaked off and went in to my brain which was causing the endless migraines and high fevers. I had a brain surgery 5 days ago and I’m looking at at least 6 weeks of iv antibiotics and possibly a valve replacement surgery once the vegetation is reduced.

[Puppers_123]

Hi!

I'm sorry to hear what you are going through! Wishing you a speedy recovery.

I was here in search of answers 'coz my husband had a bout of VM in August 2020. Exactly a month after he was tested positive for Covid-19. But his detailed blood virology test reports came negative for most all the bacteria and virus except for - Candida. CSF test also was clear for VM. But he still was showing VM symptoms and was treated for the same.

He doesn't have a stiffness in the neck but his right arm and shoulder was stiff back in August. Now it is a little better with physiotherapy but he still can't lift it to shoulder length. It has only been 3 weeks since his discharge.

I'm a little scared for him and have no clue on how to take care of him at home or what are the other symptoms that I've to be careful about in the future.

Would love to hear from y'all!

Thank you for your time.

[MrsMagu in reply to Puppers_123]

Hi puppers, I hope you get some answers! I’m back in the hospital for another brain surgery and my diagnosis has been changed again. Very frustrating.

You will likely have more responses if you start your own thread. Good luck!

[Puppers_123 in reply to MrsMagu]

My heart goes out to you! I wish you a speedy recovery. And, I know it is frustrating but really a positive mind helps.

My husband’s doctors told us that his positive mindset has helped him in the road to recovery. So please hang in there with a ray of hope. For hope is what we all have to have. I will pray for you.

<3

[Veba]

That's insane. How on earth can they mix that up. Did you have a lumbar puncture at the outset? Stiff neck, excruciating headache, photophobia and misophonia and nausea. That would ring an alarm bell for meningitis surely in any medical area. Didn't you have nay of the above symptoms? If so, why would they believe it to be a corona virus I wonder? Did anyone say anything to you and explain why they missed the correct diagnosis?

[MrsMagu in reply to Veba]

I all of those symptoms except misophonia and stiff neck (I did have achy muscles). I was told it was Covid via teledoc and could only see my primary doctor after 3 days with no fever. I was sent home with ‘It doesn’t look like Covid, it looks like you had aseptic meningitis’.

A few days later I was sent home from the er without a lumbar puncture and a diagnosis of fever, even though I told them my primary said he thought meningitis.

Back to the primary, referral to infectious disease specialist. Passed out during her visit and she called 911. That’s when I finally got a lumbar puncture and it came back negative.

During a 10 day hospital stay I found out I have endocarditis and fluid on the brain. Brain surgery to irrigate the brain. 6 weeks of antibiotics for the heart infection. Went home for a week.

Started having stroke symptoms, slurred speech and nonsensical words coming out, numbness in face and hands. Back to er.

I had at least a dozen episodes of stroke symptoms but they say it wasn’t stroke or t.i.a. or seizure. It’s was irritation on my brain.

During this 7 day hospital stay they saw more fluid on the brain and went back in for surgery. Took a piece of skull off and let a lot of blood out and put in a drain for 3 days. I’ve been home for 6 days now and only having extremely mild slurred speech for a few minutes at a time. But the biggest thing is I’m not having anymore migraines/headaches or fevers!! They say the 2 issues aren’t connected but I don’t know about that. They also keep saying it’s rare and that’s why they didn’t see it. I don’t know about that though.

I am happy to answer any questions anyone may have. I would love to find someone who had something similar.