Another episode

Another episode

Ok it has happened again. I moved to a new community, and wanted to get established with a Physician. My headaches and neck / back ache and the burning feeling has returned. Upon meeting the doctor I explained I have Mollaretts meningitis and he said ( what is that). I explained it is reoccurring meningitis. He immediately said "I've never heard of that, viral meningitis, is not serious. I then pulled out my ipad and showed him the stories on here, from meningitis now, and asked him if he didn't think, that many of us thought it wasn't serious. I had copies if 8 of the 17 hospital admissions and for his convenance I had highlighted the elevated WBC, spinal tap studies, and my ICU admissions. He then said, let me look it up on his lap top, and commented, yeah here it is. At that point he said, you need a specialist, and now I am waiting to get an appointment with an infectious disease doctor.

I left frustrated and angry, that I had to teach him, about the condition, yet I have to wait to be seen yet another doctor, for what he initially said was not a serious condition. Meanwhile the headaches are there along with the burning in my back and neck, nausea and general feeling of how much worse is it going to get? Trying to increase acyclovir and rest as much as possible while I wait.

8 Replies

  • I know the frustration you feel but I also have sympathy for the doctor you saw. It's been 38 YEARS since I was admitted to the ICU with meningococcal meningitis, septicemia and DIC...and I've NEVER met anyone (including BM victims on this wonderful website) who had my symptoms or my after effects. Never.

  • So sorry! It's so frustrating I know but you are strong and you can do this!

  • As a fellow Mollaret's sufferer I know exactly what you mean. I had to have an almost stand up row with my doctor when he told me that I was malingering by not going back to work after a serious attack of VM. I was discharged from hospital the day after almost dying because VM is 'no more serious than flu' and because I could stand up. Stand up that is with the help of two nurses holding me! Try downloading the Meningitis Now leaflet on VM and taking it with you and if you get a doctor that says it's not serious then by all means PM me and I'll send you my email address and they can contact me and I'll put them straight. It's not only doctors who can give a second opinion!

  • This is a SERIOUS issue and one that needs to tackled by medical schools.

    Someone taught them that meningitis was not serious. A neurologist I don't think would ever say that meningitis was not serious.

    Maybe meningitis now can help with this misinformation in medical schools.

  • You poor lady , I can empathise with your condition, it is really frustrating when going to the surgery and explaining to "different " Drs our condition, and basically teaching them ! Hope you not to bad , put your feet up and rest up xxx

  • Just checking in on you Sopie. I haven't posted in quite awhile. I've become sort one track minded. I truly hope that your finding relief. I would like to continue fostering our online connection. It's so beneficial to have others who can relate to the circumstances. My sincere wishes for your happiness and recovery. We will never be the same but we can have a quality of life and making new friends is always a plus. Good luck and keep in touch.

  • Hi Veezee-- thanks for the note-- I have had a few weeks of not doing as well as I could be.  Been increasing Acyclovir and resting more. I have a couple of dr visits this week -- I have decided to investigate disablity opportunities. I haven't been able to work full time in over one yr now and even with the recess from work I know I can not return to an environment where I have to be top of the game. Historically I have developed  pericarditis which required hospitalizations immediately after a meningitis hospitalization. For the the last week I have had the sharp pains in the chest--shortness of breath--- heart palpitations -- extreme fatigue --- to do along w the headaches-- stiff neck-- anxiety--nausea-- backpain in my shoulder blades -- dizziness - ringing in my ears so loud-- confusion --- what wouldn't give for a week off from these feelings

  • Oh my gosh Sopie. I can't believe you just described everything I've been feeling and experiencing. It's been 8 years and I have never fared well. I haven't had the health care or funds to get the proper help. It's funnybut in the last year I have received 2 steroid injections and each time I've felt some what better for a few days. As a whole I am having to rest so much I feel like I'm becoming bedfast. I'm losing the strength to even try. This makes me wonder if I'm still having some ongoing infection.  Don't want to go on its just that I'm really surprised that your reply sounded so much like myself.  Best wishes with your health. Take care and I'm praying for your health.

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