I am post bacterial meningitis and now diagnosed with general widespread neuropathy. Is this a common outcome?

[Jeffery]

Also left deaf in Rt ear and with bilateral vestibular imbalance.

[Dene]

Hi

Neuropathy was a thing first mentioned to use it's a known side effect after meningitis

Imbalance

My wife is like this post bacterial meningitis she daily has what she calls the wobbles often unbalanced it makes her feel funny the sensation of feeling dizzy or like she's falling

she has neuropathy as the Doctors say

she cant feel things especially her index fingers thumbs this means she drops all sorts of things she just cant feel an item in hers hands or when its dropping she often drops a cup or beaker she recently had a nerve test which we are waiting for the results she has numbness in her feet also with her hands it makes it hard to open things a packet of sweets / crisp if i give them her she tries but cant hold them right and pull them open because the feeling isnt there.

she also has partial deafness often i tell her to turn the TV down she says she cant hear it.to me the whole street can hear it lol

she's been home a year now and she still has lots of ongoing problems many weren't there when she came home so that might be something to be aware off post meningitis changes that might occur

[Jeffery in reply to Dene]

Hi Dene, I can certainly empathize with your wife. My daughter can hear my radio in the van half way down the street. And it is on the Catholic radio station so I get lots of strange looks. I find that background noise sends me over. I can only process one sound at a time. If they compete I'm done. Thanks for the reply. Jeffery

[paul1224 in reply to Dene]

Hi I don't know if you will get this

Your wife sounds like and I am 12 years on

I to have neuropathy can't fell any thing knee down and in hands I was also left with diabetes and only 3%hearing in left ear none in right lol 

I wish you all the luck and just remember she's not alonepaul1224 

[daffodil]

Hello Jeffrey,

I also had men b and septicaemia,back in 2008 and have some of your problems -neuropathy(althoughI had this before due to ME) and vestibular damage

.For the neuropathy I am prescribed Gabapentin ,which seems to help a bit,although ,due to the balance damage I am on crutches and wheelchair and maybe dont notice the loss of feeling in my feet so much now.Do your feet and hands get freezing?I use "little hotties" handwarmers inside my slippers and shoes and this is great for keeping my feet warm.Dene -this drug may help your wife?I certainly drop things far less since Gabapentin -for a while I had few mugs or glasses!

I am not sure when you had meningitis?My vestibular damage has been the worst effect of M and is still as bad ,nearly 5 yrs on.I did have vestibular rehab,but for some reason it made me worse and it was abandoned.It is the most disabling effect as I am unable to satnd without crutches and need help with my personal care.24/7,my head/brain feels like its spinning and wobbling like a jelly !It is horrid,so I do sympathise.I had significant brain swelling and wa s told that it can take many months for swelling to subside.

One of my MT buddies had vestibular rehab through the Trust,as it wasnt available in his part of country and 20 yrs on from M ,it has made a huge difference -so dont give up and see if you can be referred for vestibular rehab on NHS.

From my reading on the subject it seems that if you have bacterial M and septicaemia,this is a very dealy combination and the blood poisoning can do a huge amount of visible and hidden damage.

[Jeffery in reply to daffodil]

Hi Daffodil, No I didn't have septicemia but I did have a hemorrhage of the brain out through the scull. My feet do get cold and discolored at times and my legs, feet arms and hands go numb. Thanks for the advise on the hotties. I find that just putting some sox on helps as I have a barefoot habit. I am having rehab and walk about a half an hour daily with a wheeled walker that has a seat . Walking in the dark is worse with the visual /vertigo and I sweat perfusely with any activity. I am having a repeat nerve conduction study in 6 months to see if the neuropathy is worsening. Thank-you again for responding. Jeffery

[daffodil]

Hotties are cheapest on amazon -you can get in boxes and they work out about 40p/pair.

When did you have Meningitis?

Yes -walking in dark very hard-actaully one of the exercises I do still do as it teaches brain not to rely on sight,which is what happens when vestibular system damaged.Another one I still do daily is watching a moving screensaver for up to a minute at a time-helps with adjusting to movement triggered vertigo.

Take care and let us know how you progress.

[Jeffery in reply to daffodil]

Thanks Daffodil,I developed streptococcal meningitis March 2011. I was in a coma several days then airlifted to a bigger center. They immediately drained a catheter bag and half of fluid off my brain, went up thru the sinuses and started to scrape infection away. They saw the brain tissue, backed out, consulted with a neuro-surgeon and replaced the brain and patched the holes in the skull with cartilage from my leg. I came to with some strange hallucinations and having had 2 brain surgeries all from a trip to the er for a wicked headache. Not a very cooperative patient I'm afraid. What a journey since. Thanks for the support. Jeffery p.s. I play mahjongg, a matching game on the computer that forces quick eye movement from side to side and this has helped. When in the hospital I couldn't even stand to watch movement on tv without extreme nausea.

[daffodil]

Hi Jeffrey. You are in very early days yet and sound like you're doing amazinglt well considering what you have come through.It is frightening but also humbling to hear what Meningitis has put folks through.If you look on MT main website-under Gillians story-you will see mine!Its too long to keep writing about.The mahjongg game -where do you find it online?

The nausea and vertigo are sdtill my biggest and most stubborn aftereffects and Im now not allowed to drive.Even thew shortest journey causes travelk sickness so I always have to take pills beforehand.

THis is a great forum and youll find folks will reply.You can say how you feel and there will be someone out there who can help and empathise.

[Jeffery in reply to daffodil]

I can't tell you where to find Mahjongg on line as a friend of mine set it up on my computer under games. maybe if you google it you can find out. Can you ride a scooter to get around for independence? You don't need a licence for that.