Recurring symptoms over 50 years

[SarahLion]

Recurring symptoms over 50 years. I think that the medical profession doesn’t fully understand recurring meningitis syndrome.(RMS) For me when I am stressed or tired or a bit ill whatever it is that causes the meningitis is still living in my system and it flares up again sometimes not very badly and sometimes really badly. My doctor just says that recurring meningitis is incredibly rare because she’d never heard of it. I don’t know anybody else who has this happened to them.

I have joined a recurring meningitis syndrome Facebook page and website in America and I am hoping they will reply to me

I am also not able to Read people’s full posts on here. I’ll make it to the first bit and then when I press the ‘more’ that it only gives me the option to report!

[Vmzoster]

It takes a specialist. It's better to see an infectious disease doctor about this. They know it fairly well. They can also help to explain whether you have reoccuring 'symptoms' that are just long lasting from previous infection or recurring meningitis since there is a difference. Not possible to know for sure that it is reoccuring meningitis without spinal.

[OlamanaMartel]

I have never really recovered after 1 and 1/2 years! I will be getting a neurologist apt soon hopefully to find out something, and maybe get some tests done and maybe some help, the head and neck ache is so tiring . What is the recurring group u have joined and would u recommend it?

[SarahLion in reply to OlamanaMartel]

They haven’t replied to me yet. I think if you search recurring meningitis on Facebook you will find it. There is also a website. I’m so sorry you are struggling as well. My symptoms have always been called CFS/ME. Nobody listen to me when I said my spine feels like its on fire. I’m really tired of this. Good luck with the neurologist. I don’t know who to go see. I might go back to the infectious diseases unit. I have no idea who might know what to do