Never diagnosed but 99.9% sure I had viral meningitis

I got sick on St. Patrick's Day, March 17th, 2016. I had a headache during the day (and I hardly get headaches). At night my neck felt stiff and I tried to go to sleep. I awoke with a severe heart palpitation that took my breath away for a second. I went online and searched my symptoms since it alarmed me. Webmd had a pop up that said if you have a headache and are experiencing neck stiffness go to the E.R. immediately. I debated back and forth on whether or not to go to the E.R. Finally at about 3 or 4 in the morning I woke my husband up and told him I was going to drive myself to the Hospital. He insisted on driving me. When we got there my temperature was normal, I could touch my chin to my chest and it wasn't (the worst headache of my life). They did a ct scan which came back normal. The E.R. doc gave me some pain meds for the headache and sent me home. When we got home we were obviously tired, I tried to sleep but my neck was really really hurting. Still worried I called my family doctor when their office opened. I asked if meningitis can be missed by a ct scan. The receptionist said she doubted it but would ask my doctor. She called back and said the doctor said if I had meningitis they would have found it at the E.R. The next three days I felt back to normal. I saw my family doc and she thought it was just anxiety and I said yeah, maybe that was all it was. But the following days I started to feel sicker and sicker. I started to get headaches off and on, I was tired, my eyes were sensitive to light, I couldn't concentrate on simple things and my short term memory was messed up. The headaches turned into all day headaches every day. Worse than when I went to the E.R. Some body aches and pains and loss of appetite some days. After about a week and a half of this I went back to my family doctor. It was horrible. She kept asking me what I was afraid of. ( I guess she was asking what I thought I had) I said meningitis, not bacterial meningitis but some other form. She said "Well no one has meningitis for a month." We talked a bit more about symptoms and she asked me to move my neck all around, which I did. She said "Your neck isn't stiff." (I didn't say it was stiff anymore!) She asked me again what I was afraid of, exasperated I said, "Meningitis!" She asked me why I thought that. I said because every time I put my symptoms in online that is what comes up. I was exhausted and in pain during this office visit. My husband was with me luckily. I brought a piece of paper with my symptoms listed on it, because my memory had gone bad. She looked at it and says "It says here your eyes are sensitive to light." "That sounds like a migraine." For the third time she asked me what I was afraid of. I started to cry, because I could see she wasn't going to help me. I told her I didn't know what she wanted me to say, I didn't know what the right answer was to her question. She refused to refer me to a neurologist and instead did blood work to see if I had Lyme. I had seen this doctor for almost 15 years. The was the last time I saw her because I decided to change doctors. Since then it has been a nightmare. My fatigue got so bad I was bedridden, I couldn't do anything! Taking a bath or shower was too much for me even. Climbing stairs was exhausting. I got too tired to look up symptoms of what I might have. I didn't make any other doctor appointments because I was too tired to leave the house. My horrible fatigue finally let up on May 1st. So I was sick for a month and a half. I still had some fatigue, cognitive issues, photophobia, personality changes and jaw pain. Which might be TMJ brought on by stress? I got a new doctor, I got a dental guard for my TMJ, I saw a neurologist and I don't know how many times I got blood tests done. The more I talk to receptionists, nurses and doctors the more stressed and horrible I feel because most of them don't believe me. I'm exhausted from all of this. My life has done a 180. I had an MRI done a couple weeks ago which showed nothing. My new doctor said my one blood test showed signs of inflammation. The other doctor at the same practice said that if I had something it would have presented itself by now. What? I didn't understand what he meant. I have symptoms EVERY day. I guess he is saying it would have shown up in the lab tests I have had. I wish back when this had started I had gotten a lumbar procedure because I don't think they can detect it now. It's almost July now. The worst thing about this whole thing is not getting validation from the many doctors I have seen. Does any one know if there is a test I can take that will prove I had/have viral meningitis and mild brain damage? I am in the U.S.A. but I am thankful for this site. I also had my first ever panic attack 2 and half weeks ago. Which was a another nightmare experience of going to the hospital. I thought I was having a heart attack, they kept me over night to monitor my heart. The next morning 3 doctors in quick succession came into my room questioning me about why I was there. Like I was wasting their time because all the tests were normal regarding my heart. If I had known I was having a panic attack I wouldn't have come, I didn't know what a panic attack felt like, I thought I was dying! I was so upset and crying over the way I was treated yet again by doctors. I'm emotionally and physically exhausted from all of this. Sorry this is so long.

32 Replies

  • Hi there, if I can reassure you at all lumbar puncture for me showed viral meningitis but my CT scan was normal. All your symptoms are the same as what I had & I was admitted to hospital for 5 days on anti-vital medication. I was so poorly. That was end of Feb & I'm still recovering. On lots of medication but fatigue is the biggest problem for me. I felt like I got no help from the NHS when I left hospital & booked myself 5 days at a healing retreat last week. I'm feeling so much better but I've had one on one care that I needed & lots of rest and sleep. It was expensive but my health comes first. I'd relax about it, take the strongest painkillers you can for the headaches & sleep when you need it. Drink at least 2ltrs of water a day & rest. Listen to your body. If it was viral meningitis you just need rest now & pain relief for headaches. I had panic attacks a few weeks ago, I think I rushed back to work to soon. If they continue then maybe see your GP for anxiety meds but to be truthful my advice is meditation & relaxation. Treat yourself to a massage if you can afford it. Look after your body. Have a detox bath with Epsom salts to help release toxins. Just be kind to yourself.

    Good luck xx

  • Hi AlliG, thank you for your reply, I know that was a lot to read! That makes me feel a bit better that your ct scan was normal but the lp was not. I'm trying to destress as much as possible. I actually have a bubble bath that has epsom salts in it! I'm starting to give up on getting a real diagnosis and just now treat my after effect symptoms and hope they fade over time. My husband and I are going to go on vacation in a week and a half, we both need to relax and destress. We are going to the beach, my favorite. :) I hope you feel better soon as well.

  • Hello Minicarly, Sorry to hear about all your stress . Request a lumbar puncture asap. This will confirm or deny meningitis . You just cant make up these symptoms, find a Dr who believes you!! I will keep you in my prayers!!😀

  • Thank you so much Mdroney! I will request one from the neurologist I am currently seeing. :)

  • Miniccarly,I got VM in 2012,everything you described.Terrible onset headache,much more painful than a migraine.My GP gave me pain killers and sent me home.They did not work,went to ER that night,they took my temp,104.7.They packed me with ice blankets immediately and I got 2 very strong I.V antibiotics immediately.The attendings called it Meningitis right from the first minute.The infectious doctor and Neurologist were called into the E.R from home.Catscan negative.MRI,negative,MRA negative.Spinal tap showed very high White blood cell count,700.You are supposed to have 4.This immediately confirmed VM. They ruled out Bacterial Meningitis but said this was just as severe.One doctor still maintains B.M. I went home in a week and gave myself intravenous medications through a pic line they installed in my chest at the hospital.This went on for 2 months and my White blood cell count kept dropping to a close to normal level,66 was the count,it was still too many.I still have the virus in my system,I lost some hearing,I still get strong pulsing in my ears,i still get low grade fevers,and whenever I push myself my head lets me know I've done too much.They said I have Chronic Meningitis and that when the brain goes through this much trauma,it could take 15 years for it to heal.Every case is different of course,best of luck to you !!

  • Oh my Bekele! That was quite a dangerous fever you had! Luckily my ears have not been affected, but my sight has. My vision has gotten more blurry and my eyes are always sensitive to light. It sounds like you went to a hospital who actually knew what they were doing. Are you from the U.K. or U.S. or somewhere else? 15 years to heal?! Ugh, I hope not! But, I'll take 15 years to heal over never healing at all! Thank you for reading and replying to my really long post. I hope you feel better soon, wishing you well.

  • My Hospital is in Orange County N.Y.Located in Middletown N.Y ,about 90 minutes north of Manhattan and 2hours south of Albany,N.Y. They were Amazing !! Orange Regional Medical Center.

  • wow I just noticed this, middletown NY not too far for me..I may have to check it out...I am still on the prowl for professionals who not only believe you but actually know about meningitis. right now since ending back up in ER I have switched from my local hospital to a hospital about an hour from me UCONN medical center. they were the most understanding since this ordeal started and I have a follow up appt. with their neurology clinic next week but good to know about middletown ny . You so far are the closest person to me with this nightmare !

  • Similarly,all my tests were negative as well.They checked me for Lyme 3 different times in case they missed it,but as soon as they did the first spinal tap THEY KNEW it was Meningitis.That is a true tell all of any infection. The puzzling part is that I still get strong headaches,still have pulsing in my ears and my sight seems to be affected.I'm not sure if this is because of aging or the meningitis, I'm 59. Something else is still going on I'm sure.Will have to have it checked out again.Good Luck to you !

  • Hello, I had Viral Meningitis. I had been having stomach issues I was scheduled to have my Gallbladder removed my GI Dr wanted to do an Endoscopy before the surgery. I had the endoscopy. A couple days after the endoscopy I started getting a knot on the back of my neck, my Dr sent me to the ER they told me I had an infected lymph node and put me on antibiotics as the week went on I kept getting chills and body aches. Fri morning I woke up I couldn't move the right side of my body but I was in so much pain, my daughter had to call an ambulance I couldn't walk or hardly move. They could not figure out what was wrong with me. My blood work was showing infection but nothing to explain the right side of my body being paralyzed. They had a neurologist look at a ct scan and seen something that I possibly had a stroke so they transported me to a hospital in Chicago. The Dr there looked at my blood work and symptoms and immediately wanted to do a lumbar puncture. They did do a MRI and confirmed that what the hospital seen was a very small brain aneurysm that I probably would of never known I had unless I had the MRI. But I was admitted may 20 and stayed in the hospital until June 1st it took that long for me to walk again with assistance! I've been really weak and my headaches have been horrible. I have no clue when I will be able to go back to work. I walk with a cane now, today my aunt asked how old my daughter was and I couldn't think of her age. I get confused and I try to say simple things and can't get the words out. I'm not really an emotional person but there are days I just cry. I am so glad I was transferred to the hospital in Chicago and I only see my neurologist for treatment. I tried to see my general Doctor for follow up after I got out of the hospital and he acted like it was nothing serious or a common cold. I hope you get answers! This disease is very scary. And the recovery is just a hope for the best kind of thing!

  • Dear mincarly some TB virul are not comming in test. Plz do a course of TB virul I hope and I believe u will ok.

  • Hi Wajidkhan, I am getting a lumbar puncture soon. Hopefully this will show if I have meningitis and if I do which kind I have. Thank you :-)

  • Minicarly, very happy to hear that you have a lumbar puncture scheduled That will give you a lot of very necessary info! If possible , until then, try to rest & reduce your stress level as much as possible! Be vigilant until you get answers! Will keep you in my prayers 🙏

  • Thank you so much Ddroney! 🤗

  • Hi Mdroney, unfortunately I did not get the validation I was looking for with the lumbar puncture. It was done 4 1/2 months after, so maybe that is why it came back okay. While I was having it done the attending nurse commented on how much spinal fluid came out. Like gushing out. I asked my neurologist if they had checked the pressure of the spinal fluid during the spinal tap and he said no, I began to tell him what the nurse had said - but he just interrupted me and went on with what he was saying. I have one last test for this whole thing. I see a neuro-psycologist in September to do a neuro-psyche test, which is basically a long interview and see if I have problems cognitively or other. Which I most definately do!

  • just because your lumbar came back clear does NOT mean you did not have men. My first lumbar was not clear when first diagnosed..I was back in ER a few days ago with all same symptoms just not quite as bad as 2 months ago...they did anothr lumbar and it was clear so they brushed it off and said it was not meningitis again and that it does not come back...unbelievable ..hang in there

  • Ug, I'm so sorry it came back for you Becca. :( I am really confused as to why this illness is so underestimated by the medical community. I mean hasn't meningitis been around for a really, really long time?

  • Im just as confused as you are about the medical community. I've been obsessed with learning of this horrible thing and going to start any sort of awareness I possibly can and help when and where I can.I am absolutely disgusted with the treatment and lack of knowledge Ive received since being hospitalized. I feel alone, humiliated , not understood by medical personel and family..its ridiculous

  • It must be a terrible time for you and I wish you well as soon as possible. I understand how frustrating it is when the doctors do not listen, but you have to bare in mind that you have been numerous times to both the doctors and the hospital and, although yes they can get it wrong sometimes, I don't want to undermine you but i personally feel after so many visits it would have been diagnosed by now. It is possible that you've come down with a virus that has shown itself with migraines etc. And that is why it has lasted so long. I suffered a serious critical bout of bacterial meningitis last year, a few weeks ago I suffered with exactly the symptoms you mention and was rushed back to hospital but it turned out it was just a virus. Keep an eye on yourself and at the end of the day YOU know if you feel something is seriously up! Best of luck X

  • Hi geoansell, I know my story sounds very improbable. I'm so sorry to hear you had bacterial meningitis. Are you still feeling after effects? My new family doctor, the woman doctor of the two doctor practice, listened to me this week and is open to the possibility of meningitis. My neurologist is also very helpful and easing my worries by prescribing me a lumbar procedure. I know a L.P. is a very serious test and can have nasty effects afterwards, but I am not sure what else I can do. I am guessing viral meningitis but it is possible it is another kind like fungal meningitis for example where they can actually treat it. It is also possible, like you said, that it is something else entirely. I know SOMETHING is really wrong. The cognitive issues I have started the first week I got sick. I have trouble finding words, trouble focusing and I forget things that happened recently. My eyes are sensitive to light all the time, not just when I have a headache. Something happened that affected my brain, I just don't know what. I will keep everyone who replied to my post updated and tell you the results of the L.P. I also haven't gotten my results back from the EEG test yet. Thanks for replying! :)

  • Here is what the NIH says about meningitis.

    Mollaret meningitis is a rare type of meningitis that is characterized by repeated episodes of fever, stiff neck (meningismus), muscle aches, and severe headaches separated by weeks or months of no symptoms. About half of affected individuals may also experience long-term abnormalities of the nervous system that come and go, such as seizures, double vision, abnormal reflexes, some paralysis of a cranial nerve (paresis), hallucinations, or coma. Mollaret meningitis is poorly understood and the exact cause remains unknown. However, recent data suggests that herpes simplex virus (HSV-2 and, less frequently, HSV-1) may cause some, if not most cases. Other causes may include trauma and viral infections other than herpes simplex.[1][2]

    Last updated: 3/19/2014

    I personally can promise u most doctors don't know this. I was worked up in1996 after about 5 hospitalizations --- to date 17 and 30 spinal taps all showing lymphatic cells and PCR showing herpes virus. My immuneoglobulins are low, my bld WBC usually low high--- and I have a pericarditis. But most doctors look at me like I have 3 heads and of course their classic answer is--- I have never heard of this--- news flash until recently no one ever heard of Zika virus either-- or a few years ago no one ever heard of Ebola in the US---- things change from what they were taught in med school --- go figure

  • Sorry I took so long to reply Sopie. I am having a tough time dealing with the stress and after effects of this illness. I do have the mono virus in me. I had it twice when I was younger. It may have gotten reactivated and turned into meningitis? I don't know. I'm just really discouraged from getting no help from doctors. On the bright side my photophobia seems to have gotten better. I noticed my eyes are no longer sensitive to bright light at the end of July/beginning of August.

  • Minicarly, i only joined this amazing support group yesterday and reading your post now really upsets me terribly. How can Drs treat people in such way? You poor poor thing, I am so sorry for your ordeal and yet I have experience of such treatment and can totally relate to it, believe me I understand how you feel. (Mine is a long story regarding a total different medical issue). Drs that have no empathy should be barred from being in the medical field because they seem to be drs for the money (well in South Africa it mostly is the case)

    My hubby's CT scan was clean, his MRI was clean and yet his LP showed almost clear fluid and after the LP the Drs told me he does not suspect Meningitis and yet that was the diagnosis in the end..... and encephalitis.

    You have my prayers and I pray that you will be taken seriously and that a Physician will find the cause and confirm what you might have. Please update us on your results and how you are doing....

    Get well soon and be blessed.

    P.s just know that many people understand and you are not alone!!

    and for what it's worth get yourself some Xango - it's anti-inflammatory and anti bacterial as well as a very potent anti-oxidant natural fruit juice. If you cannot find it in your area in the U.S. please tell me and I can actually help from my side - i get you onto the system and delivery is directly to you in the USA.

    Xango is helping my hubby cope and he feels better after he began drinking this natural juice with major medicinal properties but no guarantees and promises on what it could do as the FDA did not approve it as a medicine - so i may not make any claims i can just tell you what it does for us.

  • Hi Vivien, Thank you for the kind words. I'm glad your husband is doing better. I seem to be getting better physically. But I'm left with feeling traumatized, mood swings, impulse control problems, less inhibited and anger issues. Cognitively I have problems finding words, spelling, comprehending sometimes, concentration etc. From what I believe is from a mild traumatic brain injury TBI. I never heard of Xango, it might help me with joint pain that I continue to have, especially my right elbow.

  • Hello Minicarly

    Gosh it seriously is not pleasant going through all of the issues this disease leaves behind.

    I will send you info and researches on Xango if you wish to an email.

    The fact of Xango helping in many areas of the body and my mother in law who has rheumatoid altherithis and the excruciating pain was controlled as well as taking the swelling down and even some deformities.

    Be blessed and you are in our prayers.

  • Okay Vivien, I will give you my email - I guess I send it in a private message somehow, I don't know, I haven't been on this site very long!

  • Minicarly, I am glad to read your post- I am in the same boat I think! 9weeks remain undiagnosed. My bloods, MRI & LP all came back clear. The neurologist suspects some form of viral infection but is not formally diagnosing Meningitis, which is frustrating because I have a job which is quickly becoming impossible to do or keep. I hope you feel better soon. I'd be interested to hear how your tests come back and if you get recommended any medication. Maybe on my thread there will be advice you could find useful too?

  • Hi Lizsmith, It sounds similar to me. The physical extreme fatigue sounds like what I had. All my tests, except one blood test, came back frustratingly normal. But most were done too late I think. The one blood test showed signs of inflammation so I feel a little vindicated in that - I can't MAKE myself have inflammation. So it's obviously not "made up". I feel for you with the job situation, if at all possible try to get off for a medical absense but I understand that might not be possible without "evidence" of an illness. I can't recommend any medication - I got painkillers off and on during my acute phase. Another poster on here suggested Xango, I'm not sure if that is sold in the U.S. or not. I hope you feel better soon! I mostly feel better physically but mentally I am still picking up the pieces. :(

  • Hello hello MiniCarly, are you there😍? I do hope so!; I just read your messages, and you sound like a very special and admirable person, and one well worth knowing😍

    I know this thread was started rather long ago, but I am brand new to this site, and only just discovered your questions; I am so sorry for how much trauma and terror you've been through; meningitis is indescribably painful, challenging, and stressful, but words cannot express how much worse it is when shame, invalidation, rejection, and disbelief is piled on top of it by the very people you're giving your whole heart, trust, and well-being to...I am inexpressibly dumbfounded and deeply disappointed that you've had to endure such depths of physical, emotional, psychological, and spiritual suffering, and my heart breaks for you😢.

    Alas, dumbfounded and disappointed though I may be, I am not altogether surprised--I too have circled the drain of despair that one can end up in if the illness is rare, complex, and/or has an unusual presentation, and suffered the agony and shock of being diminished, disbelieved, and dismissed by some medical "professionals" (?😉?) that couldn't find a conclusive cause or provide effective treatment.

    And truth be told, as agonizing as brain infections are--and having experienced them yourself, you know that's no exaggeration😁!--in my experience, the lack of validation from one's medical team (and often, therefore, one's family and/or friends, who usually take their cues from the "professionals", trained as we are in this culture to accept their word as gospel truth) is often far worse, and leaves a deeper and longer lasting scar😵

    Long story short, it is a deeply painful, overwhelming, and isolating experience--so much so that your entire worldview and self-perception can get turned inside-out and upside-down, utterly unrecognizable from who you thought you were and what you believed about the world before the illness began (an experience that I have personally come to count as one of the many soul-shaking traumas that brain infections inflict upon us, in addition to the "usual suspects" like fatigue, headache, and cognitive deficits--albeit one that few doctors know about, much less acknowledge😮).

    But I promise you, you are not alone. As I read through the list of responses to your initial post, I noticed how many kindred spirits are here on this site--people who have suffered the devastation of the illness itself, and that of the entire process (getting sick in the first place; finding diagnosis and treatment--or worse, NOT finding diagnosis or treatment; stumbling through recovery; discovering your "new normal" and coming to terms with all the loss and change, etc.😳😫😁😉).

    Like the posters mentioned above, I too am a fellow patient who shares a common history and experience with you. The experience is SO common, in fact, that I was commissioned to write a book about it by a national publishing company (working on it as we speak😍!; it would go faster if I had more than two working brain cells to rub together, I'm sure😄. Alas, I'm still recuperating from my most recent bout of meningioencephalitis--I've suffered at least 12, and lost count after that--and several concurrent diseases, so it's been frustratingly slow going😢).

    That's actually why my editor was so keen on this particular project. Unfortunately, the experience of severe illness (and even difficulty of diagnosis) is relatively common and well-known in our society, so he really didn't see much of a need for yet another book solely about that.

    However, the experience of being shamed/invalidated/punished for being in that situation (i.e., of being severely ill, and having great difficulty receiving a diagnosis) is not nearly so well-known, much less expected; therefore, a great many of us--who submit to our medical professionals with such faith, trust, hope, and childlike innocence when we first fall ill--feel utterly shocked, blindsided, and dismayed if we have the grave misfortune to fall into the category of the dreaded "Triple C's" (No, not an hourglass figure, unfortunately😋; I'm referring to the far less appealing distinction of being labeled a "Complex/Complicated/ Confusing Case"😋😉), and more often than not, interpret that invalidation and disbelief as a sign that we ourselves are somehow at fault, and end up collapsing into shame, self-doubt, and unworthiness as a result😢.

    Anyway, the point of all this is to reassure you that you are not alone, as much as it may feel that way; you are not crazy, as powerfully and consistently as some doctors may transmit that message; you didn't "do this to yourself"/"create something out of nothing"/"exacerbate or exaggerate the symptoms", i.e., misinterpret your symptoms as somehow more alarming than they really are, as tempting as that self-identification may be to adopt, when doctor after doctor or family member after family member tries to "get you to accept the truth of it"....

    As you probably know all too well, the insidious subtext of the above goes something like this: "We have run every possible test and can find nothing physically wrong with you, so what's troubling you is psychological, not biological-- and that means you're mentally ill, not physically ill, i.e., so flawed and weak as to allow mere emotions to derail your life and drive you to distraction. Now go home and chill out and leave the medical resources for the TRULY sick people who REALLY need them"😋😍😉).

    DON'T YOU BELIEVE IT😋. Not for ONE SECOND. I know, I's SO DIFFICULT not to sometimes, especially when you've tried so hard for so long to get answers and help--to no avail--when you're so physically, financially, emotionally, psychologically, and spiritually depleted. It's practically asking the impossible--and it's most certainly asking the superhuman😋😉.

    I grew up healthy as the proverbial horse, and never missed a day of class due to illness from nursery school through graduate school; all along the way I burned the candle at both ends (and lit it in the middle simultaneously, much of the time😋) with perfect confidence that I could handle it all with grace and ease, with no ill effects--and I was right about that, until the day that I wasn't😁😉.

    Unfortunately, "the pigeons came home to roost", as they say, and literally overnight I fell so ill that I was completely debilitated and irrevocacably disabled, and my life was never the same again. JUST. LIKE. THAT. No exaggeration, my decline was that swift and that sudden; I never saw it coming (well, at the time, anyway; hindsight being 20/20, now I can instantly identify the myriad flashing neon signs and billowing red flags that the Universe hung around every corner as a warning for my benefit, which I could not--or would not--see at that moment😁😵😋). SIGH😮. Ah well, live and learn, eh😋?

    A dozen years later, I'm still in the process of diagnosis and recovery (and diagnosis and recovery, and diagnosis and recovery--wash, rinse, repeat😍). Along the way, I've resided at every point along the spectrum of illness (diagnosed and hopeful/undiagnosed and desperate; comatose in the ICU/learning to walk again with my service dog in the park; undergoing surgery/waiting for surgery; being told there's nothing wrong with me/finding out that in fact I have a life-threatening illness, the outcome of which is far less favorable because of the delay, dismissal, diminution, and disbelief I experienced from heartbreakingly many medical providers; and around again we go😋).

    Like you, I once had numbness, high blood pressure, extreme fatigue, and a pounding heart rate that was diagnosed as "anxiety" (that ultimately turned out to be a neuroendocrine tumor, in reality😵). Like you, I had a headache that was brushed off and invalidated, supposedly caused by everything from an "infected tooth" to "sinus trouble" to "atypical migraine" (and worse, occasionally I'd get labeled with "conversion disorder" or "PTSD"😋)--in other words, anything but something "legitimately serious" like a viral meningitis; it turned out that one of those headaches was meningioencephalitis, another was a stroke, and a third was sepsis secondary to an infected PICC line (and yes, in fact, several more of those "benign" headaches were indeed viral meningitis after all; fancy that 😫😄😋).

    What a world we live in, eh😍?


    As you can probably guess from the encyclopedic post I've just thrown at you (sorry about that!!; I didn't expect this would be nearly this long when I first began, sometime last year....haha😉), I've experienced a lot of similar symptoms to yours, for which I've received a lot of really rare and unusual diagnoses along the way (The TV show "House" was ruined for me early on, because I'd been diagnosed with so many of the "rare-to-the-point-of-impossible" diseases featured in the plot that I'm usually able to solve the case myself before ten minutes have passed😍) perhaps if I share some of the specifics with you, you might be able to take them to your own physicians, and finally get some joy (fingers crossed😄?)?

    I could even share the contact information of some of my doctors with you (the good ones, of course😍), especially since I think you reside in the US, as I do (?) If you live nearby I could even meet you for lunch or something😄, and you could meet my seizure alert dog (Guardian angel, private nurse, personal physician, spiritual advisor, counselor and confidant-- all in one convenient cuddly cozy portable package💗🐶💗)!

    Anything and everything that you think might be helpful and/or comforting to you, I'd be delighted and honored to share😍. Just let me know when, what, and how (I know I write a lot😉!, so perhaps you might prefer me to send you the longer messages via email?), and I'll do everything in my power to be of service to you❤️

    Meanwhile, may you be blessed with all the health, strength, comfort, peace, and clarity that you dream of, and that you so richly deserve😋 You'll be in my thoughts and prayers💙😇💙!

  • Hi Squeakmouse, your user name is so cute. 12 times!!? I can't even imagine. How horrible for you. I'm sorry you also have had unsympathetic doctors who seem to have earplugs in and blinders on. My original post is just the tip of the iceburg of my experience. I just tried to keep the message as short and consise as possible. That is interesting that you are writing a book, if you need any extra stories in there just let me know - I've got more than my share unfortunately. I will give you my email in a pm. I live in the U.S. in Pennsylvania, I saw you told another poster that you are from PA! What a coincidence! I hope it was you that I said that, I have been reading a lot of stories and replies lately that I might get them confused. Thank you so much for the kind means a lot, everyone on here is so helpful and kind. Part of me wants to read the replies to my post and the other part of me wants to avoid it - just the whole topic, the negative memories, the horrible just gets exhausting. But thank you I will send you my email!

  • minicarly

    How are you feeling now ? I am on month 2 of Viral meningitis according to Drs caused by a mosquito bite ..went to bed early following a day at swimming hole with family as I felt tired with allergy symptoms, woke up next morning with excruciating headache ,stiff neck and back ache...would be 2 days or so before I could no longer handle the pain and went to ER. They took some blood gave me pain killers and sent me home saying probably lymes. Ended up back in ER next morning as I couldnt even lift my head and was admitted for 5 days with VM. Where are you located ? how are you feeling now ? would love to talk and share my experiences if anything to let you know you are not alone in this .Best wishes


  • Hi Rebecca, Physically I am pretty good considering. The lingering things I still have is headache once in awhile, joint pain, tiredness. I do notice like others have said that if I do too much I pay for it the next day or two. I just am spent and tired and sick feeling. What I would call my acute symptoms - practically bed ridden and horrible joint pain (among other things)-went on for a whole month and a half. The second phase as I would call it from May 1st to Mid July would have days that seemed that I was recovering, only to get symptomatic again. The joint pain was still ongoing during this time and the photophobia continued. Finally end of July to August, now, my tmj pain finally, finally went away and the photophobia went away. As I told another poster the emotional, psychological and cognitive toll is still a major issue for me. The doctors and that da#$ Lyme test! I was tested for that like 4 times! It's so annoying. Anyways I will give you my email in a pm. Thank you for your posts and I hope for the best for you physically and otherwise.

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