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12/19/2009 07:06 PM

Post Viral Syndrome? After Spinal Meningitis and


Hi. I had Spinal Meningitis along with mumps when i was 12. The pain in my back was severe and the headache unbelievable- fever, seizures. The doctor came to the house twice- he would not admit me to hospital for fear of the illness spreading on an "open ward."

For a week, my mothers friends took turns sitting with me all night. After that first week the Dr said i could be unattended at night but must not get out of bed, except to use the toilet, for another week. I remember my first shower, after two weeks in bed. Mum put a kitchen chair in the shower for me to sit on. I tried to wash but i just couldn't do it and I had to call Mum to help me get out of there. That was in Oct.

Very soon after, I insisted on returning to school. I was weak, tired, confused, had headache and pain in my spine. I dropped things often. I was cold. I was hot. I was tired and fell asleep at my desk by 11.30 am. My eyes hurt. very slowly I got better or i got used to the symptoms- i am not sure. it was a long time ago.

At Christmas we went to visit relatives, in North Carolina, and I remember being so, so cold! The lights on the tree made me dizzy and my eyes and head (and whole body)hurt. All my relatives remarked upon how clumsy i was and so forgetful.

Two years later I was still having episodes- two days to three weeks- of the above symptoms along with feeling feverish but having no elevated temp. I could no longer ride a bicycle, dance, do yoga, or dive- I fell off the 5 meter platform at the diving pool; oops, it hurt,a lot. I could still walk and swim. Everyone thought I was "exagerating" because I had been a relatively healthy and very active child who never ever took a nap, even as a tot. One of my teachers said i should go to the doctor.

At age 14, two years after having an illness of Mumps with Spinal Meningitis, I returned to the Dr. who had treated me for the illness. He told me that these "spells" of feeling unwell and no longer able to do activities that require balance and coordination, feel weak, have headaches and sore eyes, because I was having symptoms of the virus still being in my body. He diagnosed me with "Post Viral Syndrome." I was to get an eye exam and have the lenses tinted to reduce headaches. I was to have a reduced number of classes in school and carry many fewer books. I was to swim often and sleep as much as possible every night.

I asked the doctor "when will i get better?" He said that no one can say for sure- it is differant for each patient. i might get fewer "spells' or more frequent"spells" they may become longer. thay may go away as i grow up. or they may become more severe.

I am now 44 years old. The Post Viral Syndrome "spells/episodes" never went away completely. Then slowly between age 25-35 I began to have more frequent, more painful episodes. Three years ago i went to a Dr with all the symptoms I have mentioned, along with a few more that a 14 yr old girl would not have yet, and i was diagnosed with Fibromyalgia.

Four drs have diagnosed me with Fibromyalgia. I am very ill. All the time. None of these doctors have heard of "Post Viral Syndrome." One that had heard of it only knew about MME (Myo-Myalgic-Encephalitis, sp?) and i know i didn't ever have MME.

I'm interested to hear ideas.

Anyone had symptoms after recovering from Viral Meningitis?

I know I am very ill.

My doctors agree I am very ill.

I have been tested for all the usual suspect diseases. The only test i haven't had is a spinal tap. I am willing to have one if examination of the spinal fluid will help find some kind of treatment for me.

At present I am just being treated for symptoms. I have scarring on both arms from so many blood tests.

Anyone ever heard of "Post Viral Syndrome" after Meningitis?

Post edited by: Moira, at: 12/19/2009 07:12 PM


03/17/2010 06:29 AM
Posts: 68

Sorry I am answering your post so late but I just joined the group and am in the process of trying to read everyone's posts. I got meningitis in 2003 and have had problems with balance, frequent migraines (2-3 a week), and extreme sensitivity to light, especially sun light, ever since. I have never heard of post viral syndrome either. The only way to be 100% sure if you have meningitis is to have a spinal tap done. It is a very uncomfortable procedure but it might be worth having it done so you can see if you do in fact it. I am not sure if they would be able to tell if you don't have it now but did at one point. I would have to do some research on that and get back with you. I couldn't imagine living with all the problems you have had to live with all these years. I wish you well and the best. I hope everything works out for you.

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