Meningitis Now
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Hello everyone. I am a 48 year old male who would like to share my story. I had just moved into a new Townhouse with my roomates which are more like family to me on August the 23rd of 2009. Everything was going fine, we loved the new place and i was going to start a new job that i was all excited about. Well here it goes.....On july the 2nd i woke up with a terrible head ache and had flu like symptoms. I really didnt think much of it because usually the flu goes away within a week or so. Things just started to get worse and worse. I was always vomiting, lost my appetite, i couldn't hold anything down, my body was in so much pain, i could not stand bright light, had a high temperature, my head felt like it was going to explode, i had a stiff neck that just wouldnt go away. And OMG the headaches that i was getting brought tears to my eyes. After 2 weeks i had lost over ten pounds and was so weak that i could not even get up to go to the bathroom without help. After about the 17th day of being sick, i thought i better go to the hospital because i then knew that it was not the flu. With the help of my wonderful roomates i was able to get dressed and get to the hospital. They did all kind of tests including a MRI and a Ct Scan. They found out i had a kidney stone, i was like ok but ive had kidney stones before and they never made me this sick before, infact i never did really get sick, just lots of pain. And i told them that there has to be something else going on with me. But said they could not find anything else. So they sent me home with a prescription for pain pills and antibiotics. 4 more days had gone by and i felt like i was going to drop dead, so i went back to the hospital even though it was very hard for me to get out of bed. Again the same thing happend they ran tests and said that they could not find anything wrong with me, i was so pissed off and said how can there not be anything wrong with me when i feel so sick. They just changed the antibiotic and sent me home again. I went 2 times more after that and guess what? Same story. i told them that my temperature would not go below 102 and was going up as high as 104 and i was vomiting all the time. It was like OMG those Doctors are a joke. At this point i was just so weak and sick all i wanted to do was go back home and lay down. 2 days later i started to feel very confused and by the end of that day i couldnt even remember my name. So one of my roomates called the ambulance for me. After that i dont remember anything else. As i was told when i got to the hospital they ran more blood tests and ordered a Spinal Tab. I dont know why they didnt do that in the first place. And low and Behold i had Meningitis and admitted me. My god it took me to go in 5 times before they figured out what was wrong with me....unbelievable. I was placed on all kinds of IV'S and was severely dehydrated. I was like in a comma i was asleep for 4 days without waking up once. When i finally came too, i was so confused i didnt know what was going on, all the nurses and my visitors had masks on which kind of freaked me out. Finally the Doctor that was treating me told me i had Meningitis they just didnt know yet if it was Viral or Bacterial. 2 days later they said that is was Viral then the next day they said it was Bacterial. Then back to Viral. Frankly if you ask me i dont think they even knew which i had. He also told me that if i hadn't gone in when i did that i more than likely would have died. That's when i blew up and told him my god i came 4 times before and was just sent home. All he could say was that he was sorry to hear that. OMG! i wonder how many people have died from being missed diagnosed. It's really scary if you think about it. I stayed a total of 16 days in the hospital and was discharged. I was told that i would start to feel better in a week or 2. and to follow up with my primary doctor. Well the 2 weeks went by and i didnt feel at least a little better. I called the hospital and they just told me that some people recover faster then others what they didnt tell me is that some people never fully recover. 4 months went by before i had the strength to get out of bed and make it to the doctor.By then i lost over 60 pounds. I told him about everything that was going on with me. He sent me to a neurologist, to see a Psychiatrist and to get a another MRI. Its been over 4 years now and i have been diagnosed with severe agoraphobia, panic disorder, vertigo, tinnitus, severe depression and paresthesias: tingling in my hands and feet. On top of that i still am very sensitive to light, feels like my head is going to explode and have terrible headaches. my short term memory is really bad, and i get very agitated at times. Bottom line... it has ruined my life in every way a life could be ruined. I have had to apply for disability, cant do anything or go anywhere without getting sick.What i miss most of all is my job, i used to be a Certified Nursing Assistant for 23 years and i loved my job...just knowing that i was able to make a difference in someones life and to care for them as if they were my family...was a very rewarding job to me. It's been very hard for me but I have had to except that my life will never be the same and try to make the best of the life i have left...if you could even call it a life.My heart goes out to everyone who has had this devastating illness most people dont understand how life altering meningitis can be. God Bless All Of You

2 Replies

Oh hon feel for you, its seems a lot of the stories we read, we all have something in common, RE the doc's and nurses. just not knowing enough about VT etc,

Re what you have is a common after affect of VT etc, you will read we seem to all have most of these after effects

agoraphobia (anxiety disorder) i was the same, here is a web site they may help you

vertigo tried drugs for it BUT I was lucky i had a doctor that can do this treatment, cure in with in 24hrs, sounds to good to be true but it did work

tinnitus, I use a Sound Machine, you can get them cheap of ebay

severe depression I went on a course of Vit c and mutli B complex, i also found talking open on this site was a great help, and i began to draw (LOL ok cannot draw) but it helped me focus, i truly believe like all illness we feel this way, if god forbid we had a car crash and was left with scares that people could see, maybe they would under stand, but i am so grateful i did not lose any limbs that so many other people have

paresthesias: tingling in my hands and feet. I had this only in my fingers, for a short time, after 12 spinal taps (yes my doc's where idiots as well) took 4 doc's and 12 spinal taps before they got it right BEFORE they would even treat me, i feel this caused the tingling in hands and base of spine, but in time and plenty of stretching it got better

On top of that i still am very sensitive to light, hon you will be for quite a while, i bought light tinted glasses, and only had min lights on at home (summer can be a killer for this)

terrible headaches. OMG know what you mean, i use ice sticks from the £1 shop and Vic, ok you will stink but it will help)

my short term memory is really bad, I do sales at shows, funny, i can recall how to talking about a 10K machine, but cannot remember what i ate that day LOL, my mates call me the label girl, you name it has a label on it, notes all over the place, the 1st time i went out i could not remember where i live LOL, so just sat down thought WT# and then it came back to me, think of your brain as a computer it has been re booted, files have not been deleted just gone into a file you cannot remember the name, i had to go on facebook to recall ever ones name, the trick is to thing, sod it relax and i know its hard but laugh at your self, or you will go nuts

agitated well thats a polite way to put it, i cannot tell you how many times i have walked out of shops, ir turned the tv off, i find when i get agitated, i tell every one around me i am having a mandy moment, so then they know i am on one, you have to be so honest with people around you, close people get them to read this site, so they know you are not a nutter, just someone who has had there brain re booted

you say it has ruined your life in every way a life could be ruined. darling i know, and over time you will find a new life, yes part of you has died, BUT you have not!!! thou i could not give up work as i am freelance, i do a lot of volunteering in a charity shop when i have days off, they know what i have been threw, and MY GOD it so helps, you re train your mind, that when you think you are going into one, you think OK only have 1 hour till i am done, i will be fine and then you are. maybe an hour here and there, just so you feel you can give back, or as i did in the 1st year after VM, spent a lot of time going threw peoples stories and letting them know they are not going nuts, we a nation of people yes a nation, if you put all down's syndrome people on one island they would be a nation, kind and caring, we are the VM nation, no one can see out hurt, or a sadness and hidden illness BUT trust me we all have them.

Each day try and take control of the new you!!!! let go of the old, yes by all means morn the loss of the old you, but the new you will have a gift, look today you gave a gift of your story, new people to the site will read your story, and you would have helped them WHAT A gift you have done by telling us what you went threw- WELL DONE ON YOU MATE :)

wow Certified Nursing Assistant for 23 years you made a difference in someones life today just by talking here!!! and maybe in time you can go back, NEVER give up hope hon, my mate who lost both legs, has a new life, but trust me took him a few years, but he got there in the end, and so will you

you said "life will never be the same" no it will not, cry for your pass life, but please and i say please in time you will turn that corner and you will make your way threw your new life, once you have let go of the past, you may think oh thats easy for you to say, but hon myself and many others have gone threw what you have, and yes there are days even now i want to crawl up into a ball, and at my age thats not as easy as you think :)

re this devastating illness most people don't understand how life altering meningitis can be. and it is up to people like you me and other users of this site to tell our stories, on twitter on facebook on this site, hell to anyone that will listen, the more info out there the more people we can help, i found by helping others i have lean-rt to help myself.

I call it baby steps, each day is a day done, each day we learn the new side of who we are, learn to let go of who we was to who we are, ok i can be a grumpy bugger now and the girls i work with will tell me, You will get there hon, just learn to believe in yourself, gosh i am staring to sound like buddha mind you if i keep eating mince pies i will start looking like one . GOOD luck hon, "baby steps"

1 like

Hang in there. It sounds like you probably had Bacterial Meningitis from the severe symptoms you have described. I was diagnosed this past July 6th with Viral and am still dealing with all the initial symptoms. This blog has helped me deal with this crap big time. I really appreciate all of the folks sharing there stories about their issues with this disease. Like the other reply said, you have got to focus on the future as best as possible and keep your spirits up as best as you can. Hang tough and you will make it through this crap!


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