Avatar universal

I need a doctor who can help

A year ago I tested positive for a reactivated ebv infection.
At the same time I had awful neurological issues.
I was told I needed to see an infectious disease specialist.
Called every one on my insurance and they all said no.
I started feeling better so I blew it off.
Then the fatigue set back in, the neurological problems creeped up. It gets worse every day.
I have seen a neurologist.
Oh, he was sure I had Myasthenia Gravis... I have all the symptoms.
I was even hospitalized for an allergic reaction to Cipro
But the MG tests were negative
Spinal Tap, Sleep Study, Electromyography, CT Scan, MRI, EEG, bloodwork...
Only thing that comes up is - I still have have those early ebv antigens.
Finally he told me it must be the EBV and he can't help me... and knows nobody who can.
I have two small children. They miss their mother. I used to take them everywhere...
Museums, The Zoo, Nature Walks, Beach, THE GROCERY STORE!
I can't make it through a grocery shopping attempt without practically killing myself.
All I can do is sit... and move slowly. On a good day.
If I talk to much (which isn't much) I can't talk right. I sound robotic... then I just can speak.
Cooking a meal wears me out to the point I can't eat the meal.
Not that I can ever eat a full meal anyways...

So what is my question? Who is going to help me? Please if you know anyone in Houston... near Houston... who is willing to help me or at least give it a good shot... let me know. My babies need their mother back. My husband needs his wife back. I need my life back... I have not lost hope.

Thank You
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Avatar universal
I know I am not alone (in this world as a whole) - but I am alone in my own world. My family, work, friends, etc... I am alienated from.

Nerological symptoms are all I have actually... unless you want to count the anxiety. But anyone in my shoes would have to have anxiety I am sure. I could let them shoot me up with thorzine, and feed me a steady stream of high-levels of xanax, lock me in a room somewhere... and I wouldn't care anymore.

My worst bout of Neurological symptoms occured for three weeks starting Jan 1, 2009. This was about 10 days after I got over a severe viral infection. Weakness, brainfog, numbness in back of head/shoulders & neck, unable to move/open eyes for hours at a time, memory loss, slurred speech, stumbled walk, confusion and disregard for anything going on with the world around me, hypo-reflexia (my whole body - looked like a failed attempt at extreme dancing), vision problems, hallucinations. I thought I was going crazy. Couldn't even get on the computer. Tried to call doctors and was hung up on because I was not talking like a sober person. I was given all kinds of crazy medications - nothing helped... and then I was given CIPRO which I had a reaction to bad enough to prompt me to go to the Emergency Room. I had taken Cipro in the past with no adverse reaction. Finally someone gave me a high dose of Prednisone. I felt better almost immediately. Brain fog cleared. I felt I had woken from a nightmare. I thought... well, I can't be crazy because I expected this to be just another med that would do nothing. If I was crazy, it wouldn't have helped. I don't think... They don't use prednisone to treat crazy. Then I got the lab results that said I had recently had a reactivation of EBV.

So Now... it is a bit different. Its been worsening for months. If you look up the symptoms for Myasthnia Gravis "MG" ... that is an exact match for what I have going on. Most annoying is my eyes. I cant keep them open. I have to tape them open and use eye drops to do anything.... most of the time. I have to put ointment in my eyes and blindfold myself to sleep because my eyes won't shut properly - which caused me to develop photophobia. Light bothers me BAD... but thats just a side effect from weak face muscles. I have a blank look on my face most of the time. I feel like a noodle. I move slow. I talk slow. If I talk too much (10 minutes straight), my voice becomes raspy and robotic. Reading stories to my youngest is hard. Voice goes bad half way through and I feel awful because he doesn't understand. If I exert myself (wash a load of dishes) I get severe labored breathing that goes away if I lay down and relax for about an hour. I can only eat small meals. I have trouble chewing and swallowing. I have started getting very creative with smoothies. I put everything in a blender. I have body aches (minor-moderate)... so I take tylenol every 4-5 hours all day long. I get minor brain fog... I know when I have it at work.... so I go back over everything and correct all my dumb mistakes when the fog goes away. Back of my head get numb. can't lift anything heavy. If I force it I pay for it it a big way. Sometimes I feel drunk for no reason. I certainly never drink. I seem to feel best when my monthly cyle starts. PMS is AWFUL. I get moody, nasty, emotional... but once my period starts I will feel great for about 24-48 hours.... but each month it's less profound. Each month I have more bad days, less good days. I have to do something... I am scared, but I hide it... especially from my kids. So I have been diagnosed a long time ago with ADD so it was easy to get myself a perscription for amphetamines. I am taking about the max they can prescibe. It keeps me functioning to some degree. If I don't take it I can't move. I sleep all day. I wouldn't be able to work. You would NEVER think I am on amphetamines.... looks more like I smoked too much pot or something. Everything is slow-motion....

And all I get from doctors is "Wow - ***** to be you!"

No not really, I am not me anymore as far as I am concerned. This isn't me. ***** to be what I have become. I might as well go to a dern voodoo doctor. They couldn't do any less than any other doctor has.
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Avatar universal
Hi I'm sorry to hear about you're concerns:( BUT YOU ARE NOT ALONE!  About 8 years ago I was diagnosed with mono that lasted for a few years.  I had the craziest symptons, many of them being neurological as well.  I thought I had everything! Lupus, rheumatoid arthritis, HIV, cancer, Lyme disease, MS.  Basically i had so many symptoms it could have been anything.  I found that the MD's couldn't help me at all.  On my last desperation attempt I went to a famous Hollistic MD doctor in Michigan. Unfortuntly insurance didn't cover anything and we spent thousands and thousands of dollars on treatments, and supplements.  However I got my life back!!!

Ironically though just a week ago on Saturday I started to feel real dizzy.  As the day went on I started to get tingles, itches,  and electric sensations in my legs, feet, face, back of my head, hands, back, stomach, etc.  Pure randomness on where it went.  The last few days it's been heavy on my face and back of my head.   Im a 29 year old male and once again scared out of my mind.
Can you please describe some of you're neurological symptons?  Reading on the Internet is sometimes worst to do because based on what I read I diagnosed myself with MS. I'm sure the anxiety of that is fueling thsese symptoms!
I look forward to hearing back from you!
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