Mono attacked nervous system?

[samwell]

Well about three years ago I came down with a bad case of Mononucleousis. I awoke one morning to be really dizzy and sick feeling. I took the day off of work, which was a Friday, and then pushed myself to return to work by Monday. I felt really out of touch with the world and things just didn't seem right. By Wednesday my condition had worsened and I planned to see a Doctor later in the day....I didn't make it that far. By 8:30am I passed out in my chair while in a meeting. I was rushed to the ER by ambulance only to be told I had mono, and I would be better soon. They cultured the spots on my throat to assume I had the mono. After the initial ER visit, I started to feel really faint all the time and went back to the ER 3 more times as I was worried what was happening to me. Everytime I went they either said I had vertigo, or it was just the Mono. After 3 months of seeing my family doctor, he suggested I see a neurologist. He had no explaination to my symptoms. I started seeing a neurologist, the only one in my area who doesn't have a good track record, and he ordered tons of tests to rule out anything bad. I had every blood test you could imagine, an MRI of my brain to rule out a brain tumor, or MS, and a bunch of nerve tests. After all came back negative he concluded the Mono attacked my nervous system and it would be a long time before I would feel back to normal. I also had encephalitis which is why the outside world doesn't seem real. The encephalitis is improving. I notice a change in the way I see things every couple weeks to a month but it has been a really slow process. I do still feel sick daily though, and feel faint off and on throughout the day. I very seldom feel safe enough to drive anywhere alone do to the way I feel. I just went back to the doctor today, and his words to me were there is no reason I should feel the way I do and to come back in six months. I have had an income in over 2 years because my doctor wouldn't sign the slips anymore for my disability. He tried to force me back to work back then, and as of today I would feel safe or capable in an 8 hour a day job. I have lost my job, my apartment, have been denied social security and no one seems to understand the way I feel . What should I do? What are my options? Is there something my doctor is missing?

[Pred1101]

Hello,
I recently came down with mono and I am supposed to move in to a college I'm a week. I'm staying with my aunt because my family moved overseas.. Worst timing ever for this to happen. Honestly my doctor didn't do crap except stick a needle in my arm, tell me I have mono, and send me off with a packet. But I've had a fever for the past week and everytime I get up I feel like falling right back down. I feel like the lymph nodes at the too of my spinal cord is swollen as long as the one on the right side of my neck. I get EXTREMELY hot and cold, never in between. Tylenol doesn't seem to help, and I never can eat enough. I feel like my nervous system may be acting up too, but I might just be paranoid. It's never super random I don't think but when I move sometimes I feel like my muscles involuntary twitch after.. It may just be me like I said though. We're these like your symptoms?

[PattieRuby]

My daughter had mono about 2 years ago. She was out of school for 3 months on home bound. Half way through she started breaking out with a pin rash. Now we are dealing with whelps that itch a lot which are irritating to her.They come and go often and the doctors don't have a clue. They say its her nerves and I just don't know what to think but O am tired of I don't know saying. She is miserable and I know I would be too.

[samwell]

I appreciate everyones comments but this is now the 3rd time someone has commented stating they have the same symptoms as me...and then they list their symptoms and they are nothing like mine. Are you guys not reading my entry?

I do NOT have "headache, sinus infection, and dizziness".

[Liz_205]

I too have suffered from the mono attacks on my nervous system.  I first tested positive for mono when I was 27 and test three tests for active mono within the course of two years.  My antibodies for mono were out of this world, they went up from 240 to 240,000 over the course of the two years.  My symptoms were similar headache, sinus infection, and dizziness and then all that cleared up and I was left with R leg pain, skin sensitivity and muscle spasm and the inability to lift my right leg.  The pain was constant with inability to walk came and went from hour to hour. I had no idea what caused it other than I suffered from something they were calling transverse myelitis, inflammation due to a viral infection.  I too had inflammation in my central nervous system.  I went to a number of neurologists I was only given neurotin for pain and antibiotics for my mono flare ups.  I went to Mayo and they told me I could end up with an autoimmune dysfunction later in life and I would just have to deal with the pain and problems.  

Then, all the sudden all my symptoms went away for seven months.  They are back and it all started out with a sinus infection.  I personally think that like me, you are suffering from a small spontaneous cerebrospinal fluid leak on top of the inflammation and possibly cerebral small vessel disease.  The leaks are so small, pin hole size in the brain lining, spinal column or in the inner ear that they are being undetected.  Since we suffer from inflammation in the central nervous system, it is causing our brains and spinal cord to over react to the slightest change.  I have found relief by lying down and resting as much as possible and staying hydrated.  This is a very serious condition though and I hope you find relief.  

As for disability, it really stinks for the government not to back you up.  You have to have a government justified debilitating condition to get disability.  Mono is not a recognized debilitating problem because it is commonly treated and “cured”.  Cured what a crock!  

[samwell]

My symptoms don't seem to mimic yours at all. I have the feeling of being faint and feeling like I could pass out. Also, I am slightly out of touch with the world. I say slightly now because it has improved dramtically very slowly over the past 2 years. At one point nothing even seemed real.

I have never had anything you described...."seizures, fatigue, numbness, pain, burning, cognitive issues, photosensitivity, etc."


What do you have to do to get a real doctors opinion on this site?

[samwell]

There is no swelling as of now that I know of. There would be no use in taking anti viral meds seeing as the Mono didn't last long and has been gone for almost three years. It's the damage the Mono caused that's the issue here.

[Lauri8967]

Hi there - I am not a doc either, but suffered a very serious infection (viral) as well about 10 years ago.  I began having symptoms like yours but also with seizures, fatigue, numbness, pain, burning, cognitive issues, photosensitivity, etc.
I had a ton of docs try and figure out what the problem was, and they could find nothing.  My neurologist admitted me to the hospital three seperate times for IV anti-viral meds as he believed the infection/virus never went away, but settled in my central nervous system.  I was also on a lot of pain meds, and was told it would take a VERY long time to feel better.  THey actually found viral loads in my spinal fluid of mono, varicella and herpes.  I did leave that neuro, but have since been Dxd with lupus.  Many, many studies show that so many diseases are triggered by these viruses including most of the autoimmune diseases (including MS) and also fibromyalgia and CFS.  I suggest you make an appt with an immunologist, to see if they can help you.  I know how difficult it is to have something where no one believes you, thinks your being an alarmist, etc.  I felt this way for a LONG time, and it is only now - with my official Dx - that people are actually taking me seriously.
Try some othere specialists...disability is VERY difficult even when you HAVE an official Dx - so you may want to put that on the back burner for now if possible?
Good luck with everything

[ampky]

Have the docs prescibed something for the swelling (encephalitis) and the virus?  

[collegegirl09]

Hey,
I am on the same forum and your post caught my eye.  I don't know if this helps any, but I had a similar thing happen to me when I was 8 years old.  I woke up one morning and couldn't walk, then I would get extremely dizzy and throw up.  I had absolutely no balance whatsoever.  After seeing a doctor that day, I was rushed to Texas Children's and after lots of tests and week long stay, a neuroligist diagnosed me with acute cerebellum ataxia.  Basically, I had mono and the virus had attacked my cerebellum, causing the above problems.  There was not much they could do because it was a virus, and it took me months to recover.  

I am only college student, with no knowledge or studies in medicine, but based on my past experience, I would say that it could be possible that mono attacked your nervous system, because it did mine a long time ago.

I hope you find a diagnosis and feel better, Good Luck!