Post viral menengitis

[Ndella]

I am 7 months post viral menengitis,it was almost fatal,at one point i couldn't feel pain or recognise my own kids...im now struggling with walking and coordination,please help with ideas on how i can relearn walking for im the breadwinner to my children.

[kalirachi]

Hi Ndella,

This is really awful, I know because I have been through something very similar with no help from anyone. When I left hospital after they misdiagnosed a stroke and then migraines, I couldn't stand on my own or even walk a couple a paces. All four limbs went into paroxysms of trembling together very little coordination. The doctors just told me to rest, that was it! I realised the only way forward was persisting with my attempts to stand up on my own and then eventually to take one step forward and try not to panic. It took six months to be able to walk even a few steps and with a very wide gait, staggering and weaving all over the place like an old drunk. Everything, arms,legs, head etc were still trembling but at least I was walking of sorts. When I saw a neurologist six months after leaving hospital he admitted he had no idea what was wrong, any hopes I had of him pointing to a way forward were immediately dashed. I carried on with my own exercise programme and after 12 months I could walk on my own 100 yards or so before the trembling started particularly in my legs and feet. Throughout this time my coordination improved very slowly although I felt constantly dizzy. It's now over two years since the hospitalisation but I can now walk around three miles a day and in a reasonably straight line without any weaving or staggering. I still have many lingering problems that none of the medics have any answers for. The most important thing I have learnt is that recovery comes from within. If I had listened to the doctors advice I would probably still be bed bound and no doubt a permanent invalid. As I and many others have said doctors very urgently need educating in the after effects of meningitis. I dread to think just how many people are permanently incapacitated when they don't need to be. Anyway good luck and keep trying. It's damned hard going but I'm sure you'll get there in the end.

[Ndella in reply to kalirachi]

Thank you so much.

[Jonad724]

I am 17 years, this year, post near fatal VM and I experienced very similar things to you, could barely walk an even if I could I was so tired, couldn't string a sentence together and even simple questions like would you like a cup of tea, used to send me into confusion.

For me personally it was 6 months before I went back to work and even then I wasn't ready. The problem with VM is that it is not predictable in terms of recovery because it involves the brain and it's not until you have something like meningitis that you realise how very little the medical profession knows about how the brain works. The major problem everyone who is post VM suffers is that you cannot rush recovery, if you do it will just set you back and there may be a point where you have to accept that what was normal before VM may not be the same post the illness, in other words normal is a fluid state where VM is concerned.

You may recover quite quickly or it may take a while, I'm sorry but no one can really predict VM recovery although if you listen to most doctors they will tell you that you will be better in 2-3 weeks as VM is the same as all other types of meningitis. It really isn't and VM is also seen by the medical profession as no worse than flu and that's just not true. I was discharged from hospital the day after nearly dying because that's what they thought and i was then rushed back in again three days later as my neurologist said 'checking out of hotel life'.

Sorry I can't be more encouraging but the reality of serious VM is that is serious even if doctors are taught in training that it isn't. I am a community ambassador with Meningitis Now and so if you feel I can help further please PM me (click on my profile and then click on send message) and I will happily share my email address with you.

Hang in there and good luck, Jonathan

[Ndella in reply to Jonad724]

Thank you so much

[dobguy1]

Takes time. I was in the hospital for a month. Had to learn to.talk, walk, eat and learn how to process. It sucked and 13 years later I still have issues. You learn to be appreciative of what you have and move forward that way. Otherwise it can be a real rough ride. Baby steps Ndella. If you need to talk hit me up.

[Ndella in reply to dobguy1]

Thank you so much

[dobguy1 in reply to Ndella]

You're welcome

[Bonkitty]

I am 4 years post VM . I took me 2 years to reach a point where I started to recover. Walking , speech, balance were problems plus constant migraine.

Physio therapy was essential to my recovery of balance and walking. I recommend this.

Mainly though I had to rest. I couldn’t do much at all for 12 months, had to totally rest my brain.

Now I have made s good recovery . I am back to fitness and I climb mountains.. see my profile.

It takes time for the brain inflammation to settle.

Take care and I hope you make a good recovery .

[Ndella in reply to Bonkitty]

Thank you so much.