We have just launched a campaign called 'Don't Wait For a Rash'. Would you mind sharing your experience to help us spread the word?

[Liz_MT]

We know millions of people believe the rash is the only symptom and we are very worried. The rash may not appear at all or it may appear too late.

[leoni123]

When I contracted Meningitis I never displayed a rash. My symptoms included a high temperature, migraine and I was very sleepy and confused. I had bacterial meningitis and caught it through an ear infection.My eye was later forced from it's socket because of the pressure the infection had caused inside my skull. I am now blind in one eye and because of complication from a surgery I lost the sensation on one side of my face. I was in hospital for 3 months and doctors told my mum I only had 24 hours to live. If you ever suspect anything is wrong with your baby/child do not hesitate to go straight to the doctors. It is always better to be safe than sorry.

[pumpkin]

My son had Pneumoccial Meningitis at 15 mnths , he went undiagnosed three times he had high temperature and was lethargic my advice is trust your instincts and do what you think best . He was taken to A&E where i felt they thought i was an over anxious mother ! We had a CRP done which came back at 310 only then did they appear anxious and they completed lumbar puncture and IV Antibiotics . Unfortunately it left my son with visual perceptual problems and we had behaviour issuses it also affected his relationship with his dad who found it difficult to cope with . We are one of the lucky onesand i appreriate how lucky we are my advice is don t wait for rash trust your instinct and do what you think best ,.

[EllaLivia]

At 16 on January 1st 2011,I thought I had flu with neck pain, sickness, muscle pain, I was sensitive to light, out of it and generally felt like I was going to die. Presuming it was just flu, I just stayed in bed for two days but got no sleep in the nights because I was being sick so much. My mum checked me for a rash, but there wasn't one. I then went unconcious and mum called NHS direct who called the ambulance who came imediately. I was then put into the coma for 36 hours and put on anti-biotics. The rash then didn't come until one whole day later after one whole day of being on anti-biotics! I was diagnosed with meningicocal spethicemia and was in hospital just over a week.

[Schmooschmoo in reply to EllaLivia]

So glad you recovered and are here to tell your story. Hope you don't mind, I just wanted to add for others reading that 'usually' if the patient becomes unconscious before medical treatment survival is very slim. Please seek medical help ASAP.

[misswendy]

my daughter was 6 weeks old when she contracted meningococcal septicaemia, ther were no rash on her body she only had high tempreture and was not feeding very well! meningitis did not cross my mind when she was admitted to my local hospital! The night shift was slow aswell because they were not worried about her either, until the doctor came the next morning and he panicked because she was not responding to anything! the doctors could not get a line into her veins or do anything else they waited for 2 hours until a ambulance came from alderhay hospital in liverpool, hundreds of miles away from my local hospital and they managed to induce my daughter into a coma! she was rushed to alder hay liverpool where she stayed for a week! still no rash but all was well in the end and my lovely 22 months old daughter is healthy and happy! so do not wait for the rash because it may never come and i t will be too late!

[Ralfette]

My little boy contracted meningococcal meningitis at 13 1/2 months old and the rash didn't appear until he was in hospital receiving treatment, He was admitted to hospital after having a temperature of 40.2 for six hours and being violently sick for three hours, it all happened so quickly, he was trying to be sick at around 9.30pm, collapsed, went completely floppy in my arms and his lips turned blue, hence the 999 call. They couldn't do a lumbar puncture because his blood pressure was too unstable and there were fears that he wouldn't survive one, so we had an agonising 48 hour wait for the blood results to come back. The rash appeared in a&e by which point he was receiving treatment on the off chance that it was meningitis, and at one point it looked as though every time you looked at him there were more pin prick like spots, it didn't develop into the bruise like rash you know to look out for, which is why meningitis didn't cross my mind at the time

[Gavdroid]

My daughter Iona only developed the "rash" after several hour after initial diagnosis following being given Benzine Penicillin by our GP.

Iona was surrounded by medics and nurses , carrying out as many different tests and checks and when the rash did appear it was very different to what some people may imagine. Iona was 18 months old and the rash was confined in her groin area when it was first noticed and very small almost pin prick like dots.

[becgaf]

i didnt develop a rash at all, i woke one morning with severe reaction light when my husband opened the bedroom curtains, my daughter the day before had had a terrible headache that had left her unable to walk and we were worried she had meningitis - upon getting her checked out and dosed up with medication the next day she was fine, i however thought my head was going to explode and couldnt move at all, my husband was going to the doctors that morning himself and i asked him to ask her if she could give me anything (i was pregnant) and they said paracetamol, it got to the point that my 7 year old daughter rang him whilst he was in the doctors as i was screaming in agony, i thought that was the end of my life...my huband rushed home and tried to move me but the pain from any movement was too intense, eventually he got me to my doctors where they called for an ambulance as my neck was stiff, i couldnt walk, (wearing dark glasses) the only relief i had was when i put my head to the floor after screaming through the pain of actually lowering it..i was so relieved that my little girl had not gone through this ordeal and it was me instead and sympathise with any parent whose child has gone through it...its a terrible disease and its still amazing how many people dont know what signs to look out for, i have the meningits trust warning signs pinned to my fridge so if any friends come over they can see clearly what to look out for....i never developed a rash but remember the doctors all saying there is no rash it cant be meningitis, - they didnt seem to know until they did the lumbar punctures..

[amanda123]

my little boy, had got meningitis at 4wks old, no rash and was sick once but with force that it landed at the other side of the room. I took him to doctors thinking he had reflux, he had high temp, sent straight to hospital on arrival stopped breathing and everything went mad from there. He was given treatment and throughout recovery he lost his hearing, we spent the next 8months in and out of hospital as he got everything and had trouble fighting anything even the cold. at 15months his hearing returned and hes now at nursery and is a year behind, but hes a happy little boy, he also be tested for austism, and everytime hes not well, it breaks my heart to think what happened to him, awareness is key as i new nothing about meningitis untill it happened to my little boy!

[gratefullmum]

my 19 yr old son contracted meningococcal meningitis with scepticeamia a yr ago,he went to bed on the fri night with a severe headache,i found him unconcious 7 hrs later,within an hr he was in an induced coma and only then did the rash appear,his eyes heamorraged and he has had 2 operations to restore his sight,a yr on he has just been given the all clear,he had behaviour problems for the first few months but only in the last couple of months do i feel i have my son back, so please if u suspect anything is wrong don't wait for a rash, as it doesn't always appear

[Blaze]

When my daughter was 13 she had what we first thought was a stomach bug,she couldnt eat anything without being sick.The doctors told me just to make sure she had plenty of fluids.After 3 days she couldnt even keep water down so NHS Direct told me to take her to A&E. For the first 3 days she was in they said she had Gastroenteritis,on the third day she complained that her leg hurt so much she couldnt even walk to the toilet and the side of her head felt swolen.The next morning i walked into the room to find her reaching out to me unable to talk,her bed covered in urine and sick.To cut a very long story short she had meningitis and almost didnt make it,at no time did she have a rash!!

[daffodil]

I had Meningoccocal Meningitis and Septicaemia in 2008 at 42 yrs.Like so many others here ,I did not develop a rash till 3 days later and was even taken to Aand E and sent home with a pinprick rash ,which the Dr said not to worry about as it was a viral rash.I had started feeling unwell on the Wednesday -nausea ,migraine,visual disturbances like the floor coming up to meet me -I still suffer this 4 yrs on-real;ly sore throat and ears.As my husband was also in bed with a very bad flu.I assumed at first it wa sthesame and took gp advice to take paracetamol and fluids and sleep it off!This I did all day Wednesday and Thursday,until a friend popped by and said she didnt like the look of me and said to call GP.By this time I had a raging temperature and muscles wrer so sore I couldnt get out of bed,but Gp again repeated the same and told me shed come and visit the next morning.At about 8pm I felt dreadfully sick and crawled to the toilet and it was then I noticed the tiny pinprick rash -on my nose ,ears,finger and toes.At no time before this did I think Meningitis,but on doing the glass test I then thought Septicaemia.Like many I thought it could only be Meningitis if there was a rash.

I called nhs 24,who has an ambulance here in 15 mins,and remeber thinking I was safe now as theyd give ,me something for the pain.aT Aand E I was seen by a very young doctor who checked me over,said I had a viral illness and that an ambulance had been uneccessary.I begged him to keep me longer and he asked me what it was I was worried about.I said I felt so peculiara nd that I was worried I had septicaemia -by this time I could see the rash growing in front of me!

So I was sent home,by which time I couldnt satnd up or speak.My husband wouldnt take me back as he thought Id caused a drama over the same flu he had had.Thankfully,somtime later I fitted and fell out of bed.I remember little ,until I awoke 7 days later in ITU-unable to see for the first 2 days.There was a gap of 9 hrs since my 1st admission and getting back -one that would have certainly killed a baby or child.

I am very very blessed to have survived.My sight ,thankfully came back,but I still suffer migraines,visual disturbances,loss of balance,vertigo so am on crutches and wheelchair..

There is still a great deal of ignorance amonst the medical profession,who should know better.My advice is to go with your gut feeling and insist that you are taken seriously.Every minute counts with Meningitis.Ioften wonder if they had treated me at midnight if I would have been left with less after effects?Howver I am also very grateful that I did get back in time for them to save my life as so many,tragically dont.

I now raise money for the M Trust as their support - I used the helpline and had counselling -has been a lifeline to me.I also distribute symptoms cards to surgeries,scholls,libraries ,frimedns and family and anyone who will take them.

[seotesmeo]

Neither me, or anyone form my family, had meningitis, but a very close friend of mine had it. She had typical early symptoms of meningitis, headache, high fever, increased sensitivity to light and vomiting. She didn't have a rash, but as she was told later, it's mostly happening in cases of bacterial meningitis. First doctor sent her home with a flu diagnose, and she was at home for about a week. Maybe he would know better if he read more about it online. There are many sites that are providing good information about this subject, such as symptomsofmeningitis.co

Since symptoms were still there, and she was even getting worse, she went to see a doctor again. He sent her home again, telling her that it's just a strong type of flu, and that she have to lay down and rest. Luckily, her husband freaked out and took her to a hospital for another examination. Of course, they have diagnosed meningitis right away, and put her to a room there. It was a viral type, so there was no real treatment for it, but she was dehydrated. They've put her on IV, and she was left in hospital for almost two week.

It took her over 6 months to be able to get back to work, and she fully recovered a year later. It's sad that even doctor was not able to recognize symptoms and properly diagnose meningitis. Luckily, it wasn't a bacterial one. The way she wasn't properly diagnosed, she would end up with serious brain damage. It's extremely important that people are aware of this dangerous disease and that they know how to recognize symptoms as soon as they see it, so a patient can receive on time treatment if needed.

[Tiga]

I think this why maybe sometimes the doc etc do not know it is VM, like so many other people there was no rash with me, i had headache, high fever, increased sensitivity to light and sound and vomiting. When 1st taken to good hope the ambulnace driver (which i over hear him say also he asked my mothe 3 times) may be drunk!! so may be the awareness should not just state rash?

[Vickybell]

Thank you for creating this thread!! I was having this EXACT conversation with my mum the other day!

I caught bacterial meningitis from the Hib bacterial at the end of June this year. The first symptoms I noticed was a stiff neck, dizziness and muscle weakness. Went to my doctor that day and she diagnosed me with an inner ear infection! That night I developed a really bad headache and due to the pain I called my doctor the next day, who still thought it was an inner ear infection and prescriped me painkillers. The headache persisted through that day and night, and I started throwing up, was too weak to move out of bed, and became photo sensitive . On the 3rd day, my mum arrived, saw the state of me and called nhs direct who got a paramedic to come out and after 10 minutes I was on my way to hospital where I spent the next 3 weeks.

My recovery was slow, mainly due to hib bacterial meningitis being so rare (only approx 30 cases per year) and the doctors not being able to diagnose and treat me properly, but recovery was also so slow due to how long it took me to start getting treatment.

I would not have called for help if my mum hadn't as I trusted what the doctor was telling me. If a doctor couldn't diagnose me, how could the general public?!!!

Before this illness I thought that you had to have a rash to have meningitis, now I obvisiously know different, but look at what I had to go through to find that out!! There definately needs to be more awareness on meningitis and the differences in these symptoms in adults and children.

[hannah88]

I've been in 3 coma's with pneumococcal bm it is a deadly form however doesn't come with the rash.

Its symptoms are violent sickness

Light sensitivity

Sound sensitivity

Headache

Joint pain.

I've also had it a number of times and not fell into a coma.

The cause was a csf leak it is rare to have re-occuring meningitis

On the times i have fell into coma's there has always been one thing different to others, health care proffesionals rulled out me having meningitis as i didn't have a rash and with hours i became critical and tests discovered it was meningitis

The times i didn't fall into coma's was when either doctors new the time i get doesn't come with a rash or listened to my family, i still had doctors surprised by results that i had meningitis and no rash.

Ambulance crew went to someone close to me recently and automatically ruled out bm or even viral as they didn't have a rash.

I believe everyone especially health professionals need re- educating on meningitis waiting for a rash that may never come could cost lives it nearly cost mine

[granmakate in reply to hannah88]

Hannah 88

I read your post of a year ago with great interest. My husband is currently recovering from his 2nd bout of pneumococcal m. We had no follow-ups or support from NHS after the 1st bout in 2011 and now they say they have investigated every possibility but cannot find any cause. I agree completely with your comments re. the lack of knowledge within medical services - but I have a background with frontline NHS and after the 1st episode I carried his discharge information everywhere with me. This time I had to have an argument with emergency phone line but when paramedics arrived and I showed the papers and said 'this is the same' - no rash needed - I was believed immediately. Ditto in rescus. What I need to know is how to make them keep searching for the cause; I'm not sure I can live through this again.

[SilverCharm]

I just got out of the hospital January 5th, 2013 after two weeks of being treated for aseptic meningitis. I NEVER HAD A RASH OR ANY OTHER SYMPTOM OTHER THAN AN EXCRUCIATING HEADACHE. Once admitted to the hospital, I spiked a fever of 102.

The headache was so bad I did not want to bend over, sneeze or cough it hurt so badly.

After 5 days of the headache, I went to the ER (I thought I was having a stroke) and the doc did a lumbar puncture to rule out meningitis and found the pressure to be 49 with a 5 white cell count. They admitted me and started the antibiotic treatment. They never found a viral component and a blood test and culture never became positive for anything. The week before my headache started i completed a round of antibiotics for bronchitis and the docs believe I may have had partially treated bacterial meningitis. Basically, the antibiotics i had the week before for bronchitis, saved my life, as did the ER doc who decided to do the lumbar puncture procedure.

[Munchkinsmum]

Our son was 15 months old when he was diagnosed with Pneumococcal Meningitis in June 2013. On the Sunday he seemed fine but didn't want any dinner (very unusual for him), went to nursery on the Monday morning but we had to collect him mid way through the day as he had a temperature (which we put down to teething). Again, he didn't want any dinner but slept quite well. The following morning (Tuesday) he started vomiting at 6am and was really unwell. He had a high temperature, was incredibly sleepy & didn't want to eat/drink. He vomited about 4 times between 6am & 11am, then that subsided. That evening we called NHS Direct who got a doctor to call us back. He asked us if our son was photophobic, had a stiff neck or a rash, as our son didn't appear to have any of these symptoms he diagnosed Gastroenteritis. The following day he was no better, he'd hardly woken in over 24 hours & his eyes had started to flicker up & down involuntarily - we were extremely worried. We phoned out local surgery to get an appointment, the doctor did an 'over-the-phone' diagnosis & again said 'Gastroenteritis' with dehydration. My gut instinct was telling me it was more & i insisted that someone see him. At the appointment, the doctor checked him over (but kept ignoring our concerns regarding his eyes). Again, we were asked about a rash etc. We were told to take him home & bring him back again the following day if there was no improvement. I found that unacceptable & demanded a diagnosis. She eventually looked in his eyes & subsequently referred us to the Paediatric Assessment Unit a the local hospital.

From the moment we arrived at the hospital, the nurses & doctors were fantastic, & within 30 mins of arriving they had determined it was either Meningitis or Encephalitis (which i'd never heard of). He was too poorly for a lumbar puncture (that was done a couple of days later), so they inserted a cannula & started him on a concoction of antibiotics - which thankfully started working pretty quickly.

The Consultant praised us for trusting our instinct & demanding action from the GP, another 24hours & our whole experience could have been very different. At no point was there a rash & yet each of the GP's we spoke to seem to dismiss the possibility of Meningitis as there was no rash. Even the posters in the hospital listed the rash as the #1 symptom - i saw several people reading the posters & soon put them right! Our son's consultant said she always tells parents to trust their gut instinct as they know their children best, and that many GP's are not fully aware of the signs/symptoms of Meningitis and only take it seriously when the rash appears, by which time it's often too late. Our son never developed the rash!

[quaillady]

Hi my son cotracted mennicocial meningitis when he was 1 and a half he never showed any rash he went off his food very lethargic then we noticed he had cold blue feet but the doctor thought at first that he was just dehydrated so thank god he sent us yo hospital so that it was diagnosed he spent 10 days in hospital with us not knowing if he would survive but he has and we are so grateful

[paul1224]

hi

i did not get a rash for 24 hours after i felt unwell

got up for work thought i had th flu

went back to bed wife called paramedics at midnight taken in they did not know if i had a chest infction heart attack or a str11am next morning spots so if u eel un well see your doc or hoospital and tll your family to keep on at thrm dont just go by rash

[pamelafrance]

Didnt have any symptoms for my men b. I felt a little pain in my left side chest, and from then on it was downhill. My husband sent for ambulance and I was checked out at hospital and sent home. Only to be re admitted a day later. Was in intensive care then put on a heart ward after having fluid removed from around my heart. When I woke up had tinnitus, was profoundly deaf and suffered imbalance. Couldnt walk and in great pain in muscles and bones. Still take 3 types of painkiller and wear patches. Have 2 types of heart tablet, antibiotics for life, iron tablets, lactulose and pravastatins. Still have symptoms above except I can walk with crutches now and use a powered wheelchair for going out.

[bobbyvere Volunteer]

Not waiting for a rash is THE biggest thing in Meningitis awareness. I carry a batch of the Meningitis Now "Signs & Symptoms" cards and hand them out whenever an opportunity occurs.

My symptoms (pneumo M) were severe pains in the neck & head and a total intolerance of light.

[Poohbear1996]

I was 16 when I got diagnosed with viral meningitis last February 2013 I was walking home from college when all of a sudden I just stopped and couldn't move anymore where j was in so much pain , I felt sick felt like I was going to pass out didn't lime the light and had aches and pains all over my body mainly in my back and neck though. I rang my mum and she came and got me as I didn't know what was going on when I asked for a pair of sunglasses my mum was worried because it was 530pm on a winters evening when we got home my my. Took my temperature and it was 39°c so she rang my gp who told here to bring me to the doctors straight away I was freezing and shivering where my body was trying to cool down and when I got to the doctors they could see that I wasn't in a very good state and I was feeling confused and didn't know what was going on anymore they called an ambulance where I was rushed to hospital and was there for just over a week then I got let out thankfully I was OK but am still suffering from it all now but I had no rash but because my mum knew some of the symptoms she saved me from getting worse and the doctors said I was lucky my mum acted so fast as I could have been dead by morning .... So don't wait for the rash I never had one yet I still was really bad so trust your instincts as you never know it could save your life. Thanks for taking the time for reading my story. Coral

[mom_of_a_survivor]

My daughter contracted bacterial meningitis 6 years ago. Thru the day, she had severe vomiting then eventually a high fever. This was March, 2008, I was an ER nurse and had seen many cases of flu which is the way I was treating her. She never had a stiff neck, a headache, nor sensitivity to light. By 10 pm that night we noticed the rash (purpura) and still not realizing what we were dealing with I took her to the ER where I worked. She is lucky to be alive today and is in end stage renal disease awaiting a kidney transplant due to bacterial meningitis. She is chronically anemic, has parathyroidism, and is on multiple medications. She was 18 when she got sick and is 24 now.

[maineknitter]

I never had the rash or the stiff neck. I also had concurrent UTI and sinus infection, so the doctors thought that a lumbar puncture wasn't needed. Two days later I had the worst head pain ever, couldn't keep anything down, and couldn't bear to have lights on. By the time they did the lumbar puncture I couldn't feel it. I was so out of it that my only response was "just make me feel better" when asked if I wanted to be admitted since I had bacterial meningitis. I didn't care if they put me on the moon. I just wanted to feel better. That was three years ago in September when I was in my mid-thirties. This disease strikes anyone, anywhere, and without warning. Don't wait for rash or stiff neck, they aren't the only signs.

[Missjeanbrody]

I had had a sore throat and then started having really bad headaches I went to see my doctor and was sent home diagnosed as migraine told to get rest In a dark room. I was sleeping all day and only went out to drop and collect my daughter from school as I was very sensitive to light and felt very ill. I knew something was wrong so I rang the after hours doctor and they had me look into lights checked for stiffness in my neck had me walk in a line while doing all manner of tests again migraines. Went back to my doctor when I didn't improve over the weekend and she gave me an antibiotic I was still having headaches but was getting about a little better then when I finished the antibiotic I started vomiting, my headaches got worse and I started slurring and muddling words everyone said your fine you just have a virus it,ll pass. I have a history of anxiety attacks and feel this contributed to me getting brushed off by everyone. I went back to the after hours doctor same thing stronger painkillers. It wasn't untill I rang my mother and she could barely understand me that I got taken seriously she jumped in a taxi and got to me as fast as she could and bundled me into the taxi and we went to A and E as soon as I got there all the doctors and nurses where in a panic they sent me to resus and I spent hours being pricked and prided as the wonderful team of nurses and doctors worked to save my life when my dad walked into the room I thought this is it I'm dying my husband then boyfriend came in too and promised to marry me if I got better. It was touch and go but Thank god I did. I was moved to ICU and stayed there for 2weeks while they pumped me with antibiotics intrevieniously. I was really lucky that I have had no real lasting damage. They do not know what type of meningitis I had because the antibiotic the doctor gave me affected the result of the lumbar puncture. Ever since I have suffered with sinusitis and am terrified of taking painkillers for headaches incase they mask what's wrong. I never had a rash and I almost died because of it. Doctors need to do less guess work and more if in doubt check it out testing. I had a number of CTs and other test while there and tbh today I found a pinprick rash and have a sore throat I am waiting on the doctor to ring me to tell me to come in to be seen and believe me I won't be fobbed off this time if I'm not happy I will go for a second and third or forth or fifth opinion if I have to and I don't care if they think it's because I had anxiety in the past I'll keep fighting till I'm heard always trust your gut if you think something isn't right you go to the ends of the earth if you have to to get taken seriously because it could save your life.

[Stace30]

Hi all

This is exactly what meningitis should be outlined as

As i suffer from ibs, kidney problems etc i brushed different symptoms off but as a lot of people think im sure if i had a rash i would of suspected meningitis straight away

The only time i had a rash was in hospital When i was at my worst when by accident a lady noticed a faded blotchy rash on my belly and then on checking my back

By time the doctor came it had started to fade and the doctor just kept pressing and saying its faint.

To many people think its about the rash yet i had every symptom bar that for two weeks and even worked a hard heavy laboured 13hr shift at work thinking its just me being ill as usual.

[murphybrent]

Hi...I didn't get the rash . I got yellow bruising two days later only after I'd been given antibiotics.

Don't wait for the rash to appear as it may be too late !! C x

[Margannie]

My daughter was finally diagnosed (by an Australian locum doctor thankfully) after repeated visits to the local surgery at just 10 weeks old back in 1984 for bacterial meningococcul septicaemia. The only symptoms were high temperature, a "strange" cry when being picked up, and being generally off colour, for which we were told to give her calpol, which had no effect at all. We then noticed a slight swelling of her ankle, and this must have been sufficient to alert the locum whom we called out at night, who sent us straight to hospital fortunately. Had he not been so aware, it might have been a completely different story as she definitely had no rash whatsoever, and had not suffered vomiting either, as far as I remember. It was purely the strange crying and temperature that alerted us to the fact that something was wrong, but we never imagined that it could be meningitis.