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Misdiagnosed meningitis

Nov 23, 2012 - 3 comments



pressure in head




no rash


no fever


loss of appetite


worst headache



I believe I was misdiagnosed Oct. 18, 2012. I went to the Dr. for EXTREME pressure in my head. It was nothing I had ever experienced. Also, I was having a feeling of being achy, tired, loss of appetite, the works.  However, my Dr. immediately said it was Sinus.  I told him it wasn't that type of headache. It wasn't a headACHE, it was EXTREME pressure! I've had sinus problems in the past, even had sinus surgery a few yrs back, so I KNOW those symptoms.  This was pressure in my head that nothing would relieve, confusion/disoriented, I didn't have my normal personality. felt drunk even though I had not been drinking, etc.  I was even leery to drive, having to concentrate so much to stay on the road.  I was given a steroid shot, steroid pills to take home, and a Z pack of antibiotics to take for 5 days.  I was told to take Allegra-D. I did as I was told and hoped it helped.

One week later, Oct 25, I was still feeling JUST as bad as my first day, so back to the Dr. This time, my sister had to drive me because I felt SO bad, and my eyes were hurting so bad. I even packed a bag in case they sent me to the hospital. (Keep in mind, I had NO CLUE the symptoms of meningitis).  I mentioned West Nile to the Dr. but she told me, "You'd be REALLY sick if you had that!"  This Dr. looks in my ear and says there was a lot of fluid in one ear. She did a sinus Xray which came out clear (Knew that!). Again, I was given another cortisone shot (ONE WEEK AFTER THE FIRST), major steroid pack of pills (8/day, 7/day, 6/day, etc.) and Omnicef.   And, continue my Allegra-D.  I did as I was told, but still thinking THIS IS NOT right!

The following Monday,Oct 29, I was still feeling horrible, so I called my ENT. I saw him the next day (weird thing is my head started letting up that day!) and he confirmed it wasn't sinus. He suggested I have my Thyroid checked.

I had a beach trip that weekend with my husband. Just a laid back, do nothing trip, and I figured I could either sit around in my house or out on a beach enjoying the view.  During that trip, my pressure in my head went away but the headaches started. I was still tired, achy, and just felt bad. No sign of congestion in my nose or the feel of it in my front sinuses.  Still I continued every dose of meds I was given and taking 800 ml Ibuprofen around the clock for the headaches. Would get relief but it was short lived.

I was done with all of my medicines for 'Sinus' by Nov 4.  I still wasn't feeling well,

The following Wed, Nov 7,  My GYN ordered blood work for a complete thyroid check up and a menopause check (I had been experiencing sweats. I didn't have a thermometer, so no clue if it was fever breaking). The next day, my blood work came back in the normal range. So back to square one...

I lived my life being tired, achy, headaches, loss of appetite until I had enough of it. Went to the ER and told the check in lady I thought I had meningitis...I was told, you have 20 people ahead of you, you'll just have to wait or go someplace else.  I waited.  I was brought in the back for vitals. Again I mention I MIGHT have meningitis, no response, I told him ALL of my sypmtoms, They took my BP which was sky high to me 165/94. Took my temp, wasn't bad, and told me to have a seat in the waiting room again.  After 2.5-3 hrs later, they put me in a room.  Again, told the Dr what was going on.. started at the beginning with the weird pressure/confusion/felt drunk I had for 3 weeks.  She did a few lil neuro tests, which I ALWAYS pass with flying colors even when I had 2 herniated discs in my neck! She hadn't noticed my BP, so I mentioned how high it was...she was unimpressed.  She decided to give me a mono test, CBC, and a CAT Scan of my head.  AGAIN, I was told it was sinus. This time in my ethmoid cavities between my eyes, which she said BEHIND my eyes.  AGAIN, I leave with more antibiotics and a migraine headache medicine for the headaches. I never found out my blood work results.  

I felt OK for the following week, fighting fatigue and headaches mostly. Still lose of appetite.I rested most of that week.  By Saturday, Nov.17, I felt horrible again. I stayed in my PJs all day and rested all day. Sunday, went to church and to lunch and my husband wanted to go to Best Buy. I told him,"I'm sorry, I just can't!"  Back home to put on my PJ's and back into bed. Monday, again, PJ's all day and slept all day.  By this time, I'm thinking, "Come on! Somebody has to get it right!" I am usually a very active person, and this was totally holding me down.

I called my ENT to get a copy of my records from the ER.  Figuring IF it really is sinus, he would know.  I haven't heard back from him yet, but it IS Thanksgiving week and they should be enjoying some days off with family!  

I finally found online where if you THINK you may have meningitis you have to go to the Dr and SAY, "I think I have meningitis or been exposed to it!" THEN they will do testing which includes a spinal tap.  So by Monday Nov 19, I'm back at the hospital and I say, "I THINK I may have meningitis!" so they order a spinal tap, but first blood work (showed normal) and a cat scan (to make sure there was no tumor before the spinal), It was fine, so they proceeded.  All the while telling me, they really don't expect to find anything in my fluid. I'm thinking fine, humor me!  Well, guess what! They were right! However, the neuro Dr. said, "You've been on 3 rounds of VERY strong antibiotics. Those meds could have masked what you really had!"  

The good thing is my counts are fine! I would love to know the real cause of everything that has happened.  My theory is I had VIRAL meningitis and I did what the Dr.'s would have done for me...plenty of rest and lots of fluid, with pain meds!!!  It just wasn't reported to the health dept, and no telling how many people will come down with it  and it goes undiagnosed.  If viral ran it's coures until Oct 25 or so, then I've had my after effects for 4 weeks.

I am seeing my neurologist next week, and I'm not sure what he will want to do, but if it's not going to help PROVE what I had, then I will not be running more tests. I will let them run it's course even if it takes months!

The moral to my story is if you experience EXTREME pressure in your head, not necessarily with a headache, fever, or a medical attention RIGHT away!  Otherwise, when you go through the misery of the disease and your family think's you're nuts because you still feel bad and it's been 2-3 or more months later, you will have no proof of what happened to you.

All that said, I'm looking for a nice padded room with a view!  And, I'm thinking of not putting myself there, but all the others who doubt I had something like this. I almost hope they come down with it, so then they will understand.  However, I am writing this so if someone DOES experience anything I've posted, they can get help ASAP!!!!!

(edited Feb 10, 2012) Thankfully, I found the "edit" button!

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Avatar universal
by Hollygb66, Feb 10, 2013
First of all, let me say, I'm sorry for all of the errors in that post. I sure wasn't feeling myself if I let those slip by!

Second, I ended up diagnosing myself about a week later with a CSF (cerebral spinal fluid) leak! After going to my neurologist who just wanted to treat the "headache" with medicine, and not wanting to figure out the cause, I was frustrated again!  However, after a MRI showed nothing but a normal brain for my age, I knew something still wasn't right.  A friend of mine had mentioned a "blood patch" so I Googled my symptoms again and low and behold, THAT'S it!!! I had a CSF leak!!!!!
I had a blood patch on Dec. 6, 2012 and I'm back to my "normal" self!!! My personality is back!! My appetite is back!!!! And, I'm back to being the active person I am!! I am even training for a triathlon this spring!!!!!

Moral of the story, never let them tell you it's something it's not, or that it's NOTHING and it IS!!!!

Avatar universal
by A113, Jul 08, 2014
I just went to the ER with viral meningitis.  I was upset but able to articulate that it was out of fear.  They laughed in my face, took my belongings, threatened to take my son, and said I wasn't going home that night.  He previously had a rash and conjunctivitis caused by a virus that can also cause meningitis.  I'm struggling through it.  The boy and I are healthy enough to fight it off, but I worry for those in the area who might not be.  Obviously it's too much testing and paperwork to diagnose it, and too much of a public health scare to report it.  

When you wrote these lines, I was one of the people you had in mind:

"All that said, I'm looking for a nice padded room with a view!  And, I'm thinking of not putting myself there, but all the others who doubt I had something like this. I almost hope they come down with it, so then they will understand.  However, I am writing this so if someone DOES experience anything I've posted, they can get help ASAP!!!!!"

Thank you!

Avatar universal
by A113, Jul 08, 2014
When I was pregnant, I was diagnosed with a "urinary tract infection" that turned out to be Influenza A and "round ligament pain" that turned out to be an ovarian cyst the size of an orange.  The combination of those two conditions put me into premature labor, created a leak in my heart, and could have been fatal for the baby and I.

There is simply no way to fight against negligent and power hungry medical providers in this country.  We still owe our bills despite any threats or misinformation.

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