"Newbie" with lots of ????? seeking anyone who can help

[TiredPT]

Ok . . . . I actually found this forum by accident when I did a google search for neuro manifestions of EBV and found posts to be so nice and people so willing to help . . . and others with stories similar to me.  Hopefully someone can give me some info . . . I'm soooooo desperate for information and can't seem to get my questions answered anywhere else.  I'd appreciate anything, ANYTHING anyone has to offer.

I am one in the land of limbo with the whole story listed under the thread "EBV and MS".  Last June, I saw a neurologist that sent for me for an MRI followed by a lumbar puncture to rule out a tumor or pseudotumor due to an "abnormal funduscopic exam", specifically "elevation of the disc with humping of the retinal vessels at the disc margin and prominence of the veins overlying the optic nerve head with prominent pulsations present."  

MRI of the brain (with and without contrast) with focus on the orbits found nothing other than a venous anomoly in the frontal lobe (apparently no big deal).  Opening pressure on the LP was normal; CSF report states that it was negative for malignancy, numerous red cells, scant mature lymphocytes, protein 30 (range 15-45) and glucose 44 (range 40-70).  Neurologist at the time said 95% of all my symptoms could be attributed to EBV and the other 5% he had no idea . . . . and don't let the door hit you in the butt on the way out girlie . . . . .

Switched to a new PCP in September.  Based on continued visional disturances with an apparent exacerbation of ????????? and onset all these other weird sensations in January, he sent me to an opthalmologist today.  This doctor checked my vision, color vision, visual field tests, pressure, and dilated my eyes to look at the optic nerve.  

My pupils are NOT equally reactive to light -- doesn't this indicate some type of neuro problem in the brain?????  After he dilated my eyes, my right pupil remained huge for several hours after my left pupil had returned to normal size.  Is this strange??? or is it maybe that he just put more medicine in the right eye?  

My visional fields test was abnormal but also inconsistent.  He said that sometimes I would get a light and sometimes I would miss it even though it was in the same spot -- I go back prior to the appointment with the neurologist in April to repeat the test.  I keep reading about visional evoked potentials -- this isn't measuring the same thing is it?

He said the optic nerve looked pink and healthy and the eye had no vascular abnormalities -- so is this different from what the neurologist in June saw???  Is it possible that they each saw what they did but changes happened in that 8 month period?   Or is one just wrong?????  I asked the opthamologist  this question and got a very round about answer.

I am far sighted with exam but near sighted after my eyes are dilated but then said my vision is 20/20 and that my eyes are going into some type of spasm and the communication with my brain is messed up so my brain doesn't know how to correct the vision . . . . . . sorry if this sounds confusing but the more I think about what he said, the more confused I get.  Said it would likely get worse if he corrects it and just use reading glasses if it bothers me at times.  Overall concluded that my eyes are very healthy.

Also, I keep getting all these weird sensations/dysthesias.  I have an icy hot sensation from my mid thighs down constantly and mid arms down at times.  Other things come and go.  For example, I woke up this morning with numbness in the right side of my face and head that has persisted all day.  Is it normal for the sensory stuff in MS to be so irregular????  I'm starting to worry that I have become so obsessed with trying to find out what is wrong that my brain is now convincing my body to display things that really have no medical explanation . . . . . . I've decided that if the neurologist can't find anything that maybe my next stop needs to be some major mind altering psychotropics!!!!!!!!!

Thanks in advance to anyone who responds.

[Jazzyfizzle]

Ok Cog and Fog in motion here LOL ....

...a couple weeks to go by 'before' I even started....

Please ignore the brain!

Jazzy

[Jazzyfizzle]

Hey there Tired

I am around today off and on, and wanted to talk to you more but darn it,  I am weak right now. LOL hang out here in loony bin, we have our own language, I think we call Hypo Gammish :-P  

You should come visit my Neuro, he would say those are quite elevated titers. I know he would say that 10 days of valtrex wouldn't even phase it. He expected a couple weeks to go by for I even started to see any results when I began it. (and was right).

Sorry to hear your medical family is not supportive or helpful. :(  I wish I could understand these 'friends' and families. You wouldn't believe some of the stuff we hear, course you just might.

Be back

The Fizzle

[TiredPT]

Thanks to everyone for the moral support.  It helps so much to know that I'm not going crazy . . . . . or at least that I will have some company :)

Quix -- I'll try to be patient; I tend to perseverate once I get stuck on something and the thought that people are actually paying attention to me is so reassuring.  I have 3 physicians and 1 nurse in my family -- 1 MD (my sister) thinks I'm just depressed, 1 MD (my father) gets short when I want to talk about it (maybe out of fear cause he sees where this could be going), and 1 MD (my brother-in-law) that just doesn't know much about it.  I have felt very isolated despite all my apparent great resources.  I'm really glad I "stumbled" upon this forum!!!!

[Quixotic1]

EBV is Epstein Barr Virus, which causes Infectious Mononucleosis - also known as glandular fever.  Q

[Sonaya]

Just wanted to welcome you and let you know you definately are not alone.  Many fellow limbo landers here all with some similarities some not but generally feel the frustrations of not knowing what is wrong with us and having days where we wonder if we are over obsessing about things and bringing on the symptoms ourselves etc etc.  Dont worry I can so relate to that one.

You will have to excuse me but Im a bit out of touch with some of the terminology and or having a brain mush day what is EBV?

I t hink you need more testing and another neuro visit.  
Anyway pull up a chair and hang here I know this place keeps me sane and Ive learned so much already.
Take care
Sonaya

[Quixotic1]

What?  You didn't know this IS a psych ward?!!!  What!  You thought it was a support forum?  That salesman must have been a real hottie!

Q ;)

[Quixotic1]

Don't despair.  I have been reading the newest EBV stuff all day to give you a good answer.  When I answer other people ahead of you, it is because I can give them an answer off the top of my head in between doing other things, or I already have a relationship with them and I'm continuing a conversation.  But, I am not ignoring you.

EBV and MS is upcoming.  I am still trying to see if the EBV can directly cause many of your symptoms.  So I am trying to get you really good information.  

There are others on this forum who also have persistently elevated EBV titers.

Thanks for waiting.  Quix

[underinformed35]

Well I can't offer any advice as I am new as well but I am going through a similar situation and you are not alone. I feel like some days I belong in a psych ward and at this point I would be willing to try some mind altering psychotropics if it would make all this go away!:)
Just hang in there and I am sure that someone will have answers for you here.
underinformed

[TiredPT]

Sorry . . . just bumping this up hoping for a response . . . .