Contracted meningitis abroad - do i need professional help in the UK too?

Hi All. I have found this forum and am looking for some advise about the after affects of meningitis.

I am 23, and contracted meningitis in September 2015 while travelling China and had quite a traumatic time. I was in a very derelict area when i took a turn for the worse having seizures and unconscious. I was transferred to three different hospitals as i was too much for a little village to cope with. I finally had a lumbar puncture when i reached Hong Kong isolation but although they knew it was meningitis, it was too late to determine what type.

After a few weeks i was able to fly home, originally my muscles didn't allow me to walk but i slowly built the strength. I am now suffering from many after effects, and my problem is the GP's do not take me seriously as the symptoms are 'silent' and i am just sent away feeling silly. I suffer from severe back pain (i have regular physio, but it does not help the pain in the bone), i often have lingering headaches, regular dizziness, sensitive hearing (i cant distinguish different voices in busy areas and it is all too loud), on/off tinnitus (a soft fuzz noise), memory problems (small every day things/words), i feel i am a different person with regular mood swings and lots of emotions (mainly anger and sadness), anxiety, and i also got shingles a month after returning home.

My question is, since I've been back i have not seen any professionals other than my GP who dismisses my concerns with no help or advise. I was told to see a neurologist, but when i went back to chase the referral i was then told that these problems are nothing to do with meningitis so im left feeling confused and helpless. Do you think i need to see a neurologist or similar? if so who?

Thanks in advance and sorry for the long post x

[StrawberryCream]

I suggest you ring the Meningitis Now helpline to talk things through. I am guessing you weren't given any discharge letter to evidence what you had and how you were treated? It does sound as though you need some follow up with a neurologist or neuropsychologist but only your GP can refer you. Is there another GP at your practice who may have a different opinion. Unfortunately it is not unusual for the understanding of meningitis to be minimal even within the medical world. Do you know op if you had viral or bacterial meningitis? If you had seizures then I think you should be followed up with an EEG!? Are you aware that you have to inform the DVLA if you had seizures even if it was a consequence of having infection and inflammation. 4 months is still quite early for your recovery though so given time things could improve.

[Hidden in reply to StrawberryCream]

Thanks for your post! Its all been very hard work and confusing as i was in a very rural part of China, travelling alone, with next to no translations and moved around (I still hadn't woken by the time i was moved to the second hospital). The only discharge letter i received in English was to say i hadn't caught MRSA. While i was unaware i had a number of tests, and when i was moved to Hong Kong and more stable i had x-rays and MRI Scans. The drugs given were thankfully correct although i didn't have the Lumbar Puncture till HK some time later so it couldn't determine what strain of Meningitis i had but from symptoms etc told most likely bacterial. I don't recall ever having an EEG but it is possible i did so in the first hospital as i obviously have no memory of this time and my parents had not yet reached me. The first hospital said i had encephalitis though. Its been very traumatic as i don't have memory, my last is at the hostel when i lost feeling in my legs and collapsed (seizures begun while waiting for ambulance), and my parents weren't present so we've had a difficult time piecing together exactly what happened and getting medical note translations. Thankfully i pulled through, but this is why my parents and I are quite concerned about not having any checks in the UK, or is this not necessary?! It really is quite shocking how little knowledge the medical world do have of this terrible illness, and its making me feel quite isolated and low. I didn't know i had to inform DVLA but i will make sure i do so. Thank you again StrawberryCream!

[kelpie25 in reply to Hidden]

What a horrible time you've had. I had VM May 2015 and although a consultant said I'd be seen in outpatients this never happened. The csf looked clear but when tested in the lab, cells were found. It needed PCR (basically is a process which multiplies cells, apologies to scientists) to identify the type of cells. I see a neurologist routinely for myasthenia but he isn't really interested in the meningitis after effects but is helpful with the Bell's Palsy caused too by the varicella zoster virus (chicken pox) which has left me with aberrant re innervation. Microbiologist suggested I have the shingles vaccine but that's still in the pipeline.

You should, as already said by Strawberry Cream, ask for a referral, but meningitis now are the best source for advice. You should be able to download some information from their website to take to your GP. If necessary see a different one.

I still have many of the sympoms you describe, and you'll read on this site, so do many others.

[Lulu21]

That sounds like a terrible experience! I'm from New Zealand and they seem to be reasonably understanding of meningitis - at least trying to understand it. I'm currently 22 and had bacterial meningitis in May 2014. 4 months is very early on in your recovery so what you are going through at the moment, although awful, is normal (at least in my experience). I still suffer from after effects (fatigue, poor memory, poor concentration) although they have improved a lot. As much as it sucks it just will take time and rest. I feel like it would be good to see a neurologist, because they can talk to you about the after-effects you are going to experience - that might make you feel a bit better, knowing it's expected.

You say you can't hear well in noisy environments and get tinnitus. Have you had your hearing checked? I lost mine in my right ear and have those problems you described.

I also would really recommend seeing a counsellor, just so you have someone to talk to who isn't your family. My emotions were absolutely all over the show, and was in complete shock the first few weeks out of hospital. I didn't go to counselling for about a year and wish I had earlier.

Honestly everything you describe sounds related to the meningitis. For one thing, getting a serious illness like that is a massive shock to your immune system. Maybe try another GP.

Anyway, things will improve even if it does take a while. I hope it goes well for you

[viola78]

Hi geoansell,

Sorry you have had such a tough time. I would insist on a second opinion and continue to ask to be referred to a neurologist. Do you have someone you can take with you to help you fight your corner? When you are not feeling well enough to fight for yourself, sometimes you need an ally.

[Hidden]

Hi everyone. Sorry for the delay in response, I really appreciated everyone's answers and opinions. Update: I didn't get a doctors referral because the gp continued to say my symPtoms weren't meningitis related (wtf?) so I self rendered and saw a neurologist, and had an MRI of my brain and back.. ive had a second appointment with the specialist and there appears to be some 'cause for concern' in my temporal lobes and the ventricles but he won't give me any more information until the second set of scans and testing. I'm still suffering from after effects daily.. Some days I'm bed bound. I hope everyone is doing well and it's lovely we can support each other. Best wishes X

[Hidden in reply to Hidden]

*self referred

[Davew56]

Hope you had some positive news about your scans, my partner Dawn was taken into hospital this week, she's now in ICU. At the moment she's on a ventilator but we have hope that when she wakes up the damage will be minimal.We know her recovery is going to be long and hard, but family and friends are so important.We were lucky as the staff at Royal Liverpool are fantastic,we continue to hope.Your experience of having the illness abroad and dealing with certain GP's who really shouldn't be allowed to practice, we have one "The Rentons" of the Islington house surgery-- Liverpool --a disgrace to the profession. Sorry about the rant. As has been suggested move to a more understanding,more caring practice.I hope you have friends and family to give you help, hope and support during your "down" days --- take care, stay positive , and recover.-- Dave