HELP WITH POSTVIRAL SYNDROME

[Reenie]

Dear Sir or Madam:

Can you please recommend what to do for postviral syndrome with neurological complications such as fasciculations, nerve burning, visual problems, and fatigue?  Would any therapies such as IVIG or plasmapheresis work on this?  There must be a specialist somewhere who is exploring the connection between neurology and infections.  Can you help me find that somebody?  DESPERATE.  THANKS.

[Kev]

Sounds like you still have some unresolved anger issues...I don't worship Mark Anthony, but that post certainly must have stung,(to find so many who disagreed with you)... because you keep bringing it up...Let it go...cause yes folks, this thread has run its' course and I'm letting go of it..No tears please CJ or Maureen... ( who has so much anger!)Laurie..keep the faith.

[Laurie to CJ and Amy]

Oh, CJ, if you mean me, I don't mean to be cruel.  And whose weakness--mine or the doctors?  To my way of thinking, the weakness here lies with the doctor who cannot help, cannot make a diagnosis, cannot even say she cannot and chooses instead to blame me.  Those of us who are suffering are not weak, we live with it daily and that takes much strength.  Cruelty comes from those who have vowed to help and let us down.  If you see any cruelty in me, I apologize.  And it comes from pain.  Two years of unrelenting, life destroying pain.  To Amy, I would have to say--make sure the diagnosis is correct.  Don't let the doctor label you and choose an easy out.  Many things can mimic neurological symptoms--even poor posture.  I once had impaired circulation in my posterior, of all places, because I had a postural scoliosis and was constantly leaning on the area without realizing it!  The doctors first said it was neurological, but it wasn't.  The point is--investigate all avenues.  Make sure.  And good luck.  Let us hear from you and know how you are doing.  Don't let us intimidate you, Amy.  Jump in here!  This is your post.  We try to help but we also need to know what you want.  We are all thinking of you and wishing you well.

[C J to Laurie]

I didn't mean you.  I also know what it is to suffer unrelentless pain.  My pain will travel with me to the grave.  Sure, I had GBS, but that dilemna only served to speed the exposure of something much, much worse.  The rare form of Neurofibromatosis (NF-2), hereditary as it is.  My cousin died about 18 mos ago from the very same tumor in the deep cavernous sinus that I had excised  not but 4 mos ago via radiosurgery, which was merely the last resort for that tumor.  Six months prior to that, I had a massive craniotomy done at Emory to remove an entire network of schwannoma that had completely over-run for orbital floor of my left eye.  Honey?  It no longer closes.  Thank god I can still see.  The left side of my face (first left partially paralyzed from the GBS) is now paralyzed.  They had to remove the entire left side of my forehead in order to access the eye and excise tumors from my optic nerve.  They also removed schwannoma from the left temporal lobe.  By the time they conceded, three specialists from three arenas of medicine were staring at a "do not enter" sign mid brain... deep cavernous.  NF-2 is hard to handle, but I do.  Everyday, every night, 24/7, 365 days a year.  I'm addicted to morphine.  I was addicted to methylphenidate to keep me focused.  I stepped out of that nightmare and into another.  The radiosurgery laid out a new arena of pain.  Pain that radiates from the center of my universe... but I keep going.  I hurt like a MF and when I say I sympathize with you and your pain... you better damned well believe that I am not lying.  It took a 2 year stint of 1 on 1 pain therapy to get me ready for the craniotomy.  When the time came for the surgery, I made the call.  That call was the hardest pain I ever had to experience.  My incision runs from the right side of my head to the left, around behind the temple, then to the front over the top of my ear and down in front through my sideburn.  They laid the entire flap over my right cheek.  So, Laurie... when I say that I feel for you, I do.  When I say I sympathize with you and every stitch of your waking pain... I mean it!  Please forgive me if I have offended you in any way, shape, or form.  I never ever intended to jerk your chain.  Well... I wonder what Kev has to say about this??  OOPs, I forgot!  He said he was moving on.  Good.  Laurie?  My email address is mentioned earlier in this post.  If you want to vent your "pain" anger, I'm a pretty good lampost.  I have quite a few "venters" as we speak.  Try it.  It's Pain Therapy.  Again... If I offended, I apologize. - C J

[To The Fly In the Ointment]

Just what exactly are you questioning?  And what spectacular results are you expecting to find?  And why are you attacking Maureen?  Wasn't C J enough to satisfy you?  You are an angry man, Kev.  And all that anger must stem from your own inability to obtain answers with spectacular results?  Your comments just don't seem to wash.  Agitation is not inspiration.  So, inspire us.  Fill in the blanks.  Tell us about "you"... your dilemna, so that we might understand exactly where it is you are coming from?  So far, we haven't a clue?  As for post-viral?  Laurie said, we don't know that it's PVS... and we don't know that it isn't.  Sounds to me like it is one giant ? mark as described.  Elaborate Kev.  Lets hear your side.

[Food for Thought]

I have enjoyed the majority of this lively posting. However, I admit I detect an incredible amount of pain, suffering, frustration and disillusionment. And I can understand because I am watching someone I love going through it. Maybe there is a postviral syndrome. And then again, maybe some physicians are using that as a phrase to mean "I don't know what's wrong with you, but this sounds good."  The work-ups should not stop because it's not GBS, which is obviously postviral. But other problems may very well not be.

To those of you who may be victims of a catch phrase, or at least feel you are, and who feel disenchanted, frustrated, and tired of being ill, my heart goes out to you. Anyone who has dealt with this should certainly sympathize and not attack.

Good luck to you all.

[an interested observer]

This post is beginning to sound just like the one in which everyone was attacking the mom trying to help her teenage son. The poor lady has given up trying to get help for her kid because people were attacking her.

The original arguments for and against post viral syndromes are interesting and food for thought. But now it has become ugly, nasty and personal, just like towards the mom. Many good points are being brought up here, whether by Maureen or by Kev, or anyone else. The point of the forum is to provide information and alternative thoughts, not to go after each other personally.

Kathy--if you read this--at least you're not alone!! People can learn from your sad experience.