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.

[CCF Neuro[P] MD, RPS]

Dear Amy:

I am sorry to hear about your condition.  Unfortunately, unless there is documented demyelination of the MRI scan, there is no known medications for post-viral syndrome.  If there were demyelinating plaques on your brain MRI, it would be called acute demyelinating encephalomyelitis and not post-viral syndrome.  I am sorry.

Sincerely,

CCF Neuro MD

[I had it too...]

Amy:

How long have you had symptoms? It's 1.5 years since the onset of post viral syndrome for me, and almost all my symptoms have abated. I had it all - terrible muscle soreness, horrible nerve pain throughout my body, electric shock sensations, overwhelming fatique, creepy crawlies over every inch of skin, burning sensations like sunburn, dizziness, etc. For a short time I took neurontin and elavil to ease the paresthesias and burning sensations. You've probably heard this before, but it does resolve in time. If you want to discuss this further, please post a follow-up and we can trade email addresses.

ER

[Betty]

I have the same symptoms..they come and go and it seems no one has been able to help me at all..They have ruled out all causes..Not sure whats wrong....Best to you both   Betty

[GIGI]

Seems to be a similar story to mine, though symptoms not as bad as ER's.  Several bacterial infections where located and eliminated, this took four years.  It allievated most of the symptoms but one apparantely neurological symptom remains. A pulling sensation which is possibly sustained muscular contractions left side of head and face.  This is now spreading and affecting shoulders and back.  My muscles are so, so sore; I used to be so fit & flexible, not any more.  When I wake in the morning I am so stiff in the neck, shoulders and oddly enough my fingers.  These relax a little as I get up and get moving.  MRI showed nothing, EEG showed nothing.  One neuro suggested I had been left with hemifacial spasm, but nothing could be done about it. Not sure how hemifacial spasm gives me stiff fingers!!!! Been trying for months to get a question posted on this forum but without any luck.  Anyone know of better scanning techniques than MRI. What's a PET scan or a SPEC scan.  I want to get rid of this, something's out of kilter and I want it located. I want my life back!

[To Gigi and ER]

ER:  I have this also and would love to chat.  My name is Maureen and my e-mail is ***@****.  I am 4 years into this and still symptomatic.  Gigi:  what bacterial infections were you found to have and how were they treated?  Thanks.

[C J]

The Doc is telling you true about there being no known treatment.  Bacterial infections can be knocked-out with antibiotics-viruses can't.  The only treatment for post-viral is "riding it out", so to speak.  During your ride, the best perscription is to become a virtual "wet rag" and limit, if not discontinue, all activity.  Rest, rest, rest.  I can't stress that enough.  With post-viral you are trying to fight the demon that sprang from the original virus.  It's a new ball game minus the bat and the only way to win the game is to call "time-out".  It is your only defense.  Disable yourself, you disable the demon.  Time out can be anywhere from 2 months to whenever (?).  I say this because I had a pretty rancid bout with the Guillain Barre Syndrome back in 1972 and treatment has not changed.  There is still none save for rest, rest, and more rest. - Christine - ***@****

[CCF Neuro[P]MD, RPS]

thanks for the comment.

CCF Neuro MD

[Kev]

Post Viral Syndrome...come on, that's a red herring to say "I don't know what happened or what's wrong with  you. Enough with the syndromes.There too "in fashion" these days. Post Virus Syndrome? Who dreams this stuff up? So he theorized that you had a viral infection, now it's a syndrome.Wow. And I'm not be sarcastic towards you Amy, it's for the "new syndrome an hour" medical community.

[C J]

Those who have never fought this demonic dilemna need not criticize.  Post-Viral is as real as Guillain/Barre, two researchers who pinned the various severities of the "known" illness.  They disclosed the "syndrome" to the professionals years ago, who know how to "peg" it in the "new syndrome-an-hour" medical community.  After all, criticism is a disinterested endeavour to learn and propagate the best that is known and thought in the world.  Even lions have to defend themselves against flies.

[Kev]

So tell me CJ, just what HARD CORE tests (ie. MRI plaques and Evoked potentials for MS) ARE there to prove that this person is indeed suffering from this "Syndrome"...give me the evidence...What verifiable TESTS will disclose that this is INDEED what AMY has...POST VIRAL SYNDROME.....This means nothing...a virus attacked her body and now she has a " syndrome"....as opposed to someone who has a viral infection but doesn't get this syndrome...Prove to me it's not just another attempt at getting published, WHAT TESTS PROVE THIS SYNDROME CJ, and leave little doubt as to a diagnosis. It's sheep were up against..and guess where you fit in in.  

[Karen]

All comments on this subject seem to relate to adults.  My seven year old son has just had his fifth bout with severe muscle pain following a virus with fever. His first bout was at the age of 2 yrs. olf=d and he has averaged one every year or so since  Just as in the past four episodes, the pain appeared a day or so after the fever resolved and then the pain spontanously resolved in two days withour any deficits or remaining pain.  Has anyone heard of this type of reaction to a virus?.  His CPK was elevated to 2600. Sed rates and ANA were normal.  The results of the blood work were indicative of a virus. I would appreciate any comments.

[C J]

Spinal fluid.  Protein.  Via lumbar puncture.  Tis how Guillain Barre Syndrome is diagnosed.  There is NO other way.  Suppose old Disraeli was correct in his assertation that Ignorance never settles a question?  Viruses don't show up on Magnetic Resonance Imaging.  Or should it be, Magnetic Resonance Imaging cannot illuminate a virus with or without Gadolinium?  And in the future, don't use caps.  Unless, of course, you enjoy yelling at people.

Amy?  Please rest.  Viral infections detest rest.  Take care of yourself.  Be a "wet rag".

Karen?  I once helped a 12 year old boy regain his ability to walk again because of a rancid case of Guillain Barre.  It appears that Post-Viral Syndromes aren't choosey about victims.  From what I understand, pertaining to the Guillain Barre Syndrome, the symptoms appear to resemble "French polio" in young children... and "stroke" in adults.  I am not a physician, so I cannot comment on much more other than what my personal experience dictates.  I hope you find some answers. - C J

[Kev]

Nice try CJ,protein spinal fluids are indicative of many different disorders and certainly don't pertain to the "mysterious" Post Viral Syndrome exclusively as a cause....Perhaps,Amy has Guillain Barre syndrome since you keep linking PVS to it...While I accept GBS as a reality,its' patterns are quite distinct with the rapidity with which it attacks its' victims, frequency following vaccination,etc...There is a pattern..WHAT are you going to provide as evidence that AMY indeed has PVS...Your protein test is NOT evidence by itself...My point is simple...PROVE,provide evidence that one has PVS,rather than accepting a "flavour of  the month diagnosis".And for god's sake, stop linking PVS and GBS
or call them one and the same.

[C J]

Kev... I never said they were one in the same.  Most neurologists diagnose Post-Viral as having GBS-like symptoms.  The word "like" as an adjective means it's twin, the same, identical, etc., as a noun, associate, correspondence, etc.  I got mine from a vaccine.  How about you?  Did you ever have GBS?  Feel it begin with the flu?  Feel your toes go entirely numb?  Feel yourself go paralyzed from head to toe?  Spend 60 days in the hospital?  Have 9 lumbar punctures?  Go home in a wheelchair with a real strong desire to help others with their individual dilemnas?  Or do you just make waves because it's fun to do so?  Others have acquired their dilemnas from tetnus vaccines.  How about you?  Why are you so down on Post-Viral?  Down on me?  Down on the idea that it's real?  And how old are you?  What's your experience?  I don't link Post Viral with GBS... the physicians do.  Nice try, but you fail.  Go to your room.  Your behavior demands that you do so.  I've said my piece and you are history.  Go rest, rest, rest your attitude.

[From Maureen]

I have e-mailed with CJ and we chat via instant messaging regularly.  She is extraordinarily well-versed in GBS and post-viral syndromes as a patient who has battled these symptoms for over 20 years.  She has been a tremendous resource of information for me as well as many others.  She has an uncanny ability to offer this information without coming across as a "wanna-be" neurologist.  Please, Kevin, do something with your anger other than direct it against someone who has helped many people.  She is not the enemy - these viruses which have invaded our nervous systems and left damage in their wake are.

[Aimee to All]

I have all the same symptoms as all of you do and can sympathize with everyone out there.  I don't like it when the doctors say well, I don't know what's REALLY wrong--the tests don't show anything wrong, but at the same time I do know something IS wrong!  Right now, I have painful twitching muscles and irritated nerves--feel shaky.  I've had this stuff for two years now.  It's a little better but not gone.  Can't believe it when I wake up every morning and there it is.  Those of you who said it's a demon are exactly right--it just sucks your life away.  Fighting it does no good.  I cannot remember having had a virus before this started--no flu or cold, but sometimes viruses can be present without manifesting themselves.  Who knows?  Well, from one fellow sufferer to all you others, good luck and I hope we ALL recover!

[jack sr.]

I have been working for five years to get any specific help with the after efects of gbs  .it is my opinion that if the  md's dont have a pill all worked out for them  just keep coming back  pay  for your visit and we'll try another. they can;t seem to admit  there lack of a knowledge  about what will help this condition  .we  can take it a day at a time. good luck to you and i hope to e too'

[CCF Neuro[P] MD, RPS]

thanks for the lively comments.

CCF Neuro MD

[To Jack Sr./From Maureen]

Jack Sr.

Can you please describe what after effects you have from GBS?

Thanks

[Laurie]

After reading all the comments in this Post I have to say that I, too suffer from the same symptoms only worse than what anyone in here has described, and I am appalled by the suggestions of Rest, rest and more rest.  Do any of you know how BAD all that rest is for you?  Sure there are times when we need more rest than at others, but the body was designed to be in motion.  Rest actually hurts the immune system, making it more difficult to rid oneself of a virus and its aftermath.  A certain amount of exercise energizes the immune system and restores the body to health.  Even resting for one week deprives the body of one third of its strength.  Exercise boosts mental activity as well and helps to lift depression.  I don't know how much rest all of you are recommending but you just might end up with blood clots and a pulmonary embolism and that would be far worse than any post-viral syndrome could ever be.  I'm not so sure I believe in post viral syndrome either.  I know SOMETHING is definitely wrong, but post viral syndrome--no.  I think you should take a more active part in your recovery and look for a doctor who isn't so quick to slap a label on you.  And, for goodness sake, for the sake of your own health--STOP with all the rest!  Think of how and for what your body has been designed!  Get adequate rest, but make sure you get adequate exercise as well.

[To Laurie/From Maureen]

Laurie:

When I think of rest I am talking about physical, mental, and spiritual rest.  I can only speak for myself, but I do, indeed, require much more sleep and "down time" than before this struck.  If I stay up late even one night, I pay the price (more twitchy, more visual disturbances, more anxiety the next day, etc.).  If I get myself stressed out over something I pay the price.  If I don't go to church once in a while and ask for strength I get worn out.  I have to be a lot more careful about what I do because my nervous system feels so "fragile."  

Certainly, exercise factors in here.  We all know exercise is crucial to our health and well-being.  But again, for me, it now must be moderate exercise - not the mega-aerobics I used to do.  I don't think anyone meant to imply "BECOME A COUCH POTATO; THAT'S THE ONLY WAY TO RECOVER FROM THIS."  But I think most of us have found we do require more rest than before.  I wish that weren't the case as I am very Type A and want to accomplish a lot this lifetime.  I have to accept my "limitations" now.  That's just how it is.  Maybe some day I'll fully recover and this will be a nothing more than a memory.  I kind of doubt it; I feel in my own case this is my body's weak niche (nervous system).  I will always have to guard it through good nutrition, low stress, moderate exercise, and rest!  

I hope you recover fully, Laurie.  Maureen

[Laurie to Maureen]

Okay, sorry.  I thought everyone was advocating bed rest or complete couch potato rest.  Moderate rest I can see. And no gung ho aerobics.  I have the symptoms, too and it is draining in every respect--mentally, physically and emotionally.  What rejuvanates one person may not do it for another--I find that being active actually helps me and gives me more energy but I CAN definitely see your side of the situation, too.

For me, as well, the nervous system is the weak spot.  Most definitely and I, too, will have to be more careful in the future so as not to upset the equilibrium.  I think getting over this thing, whatever it is, is a very individualized process.  No, your rest does not sound at all like too much rest to me.  I just didn't want anyone risking their health with other ailments!

Good luck to you, Maureen and to all the others who are suffering this.  I hope all of us recover fully and soon.  It is miserable, I certainly know that.  Keep us posted.

Laurie

[To Laurie/From Maureen]

Laurie,  Do you feel like sharing your symptoms, what tests have beend done/results, etc.  What types of doctors have you seen?  

If you don't, I surely understand!  Take care Maureen

[Laurie to Maureen and All]

Sure, I can share my symptoms.  A lot of muscle burning, but no weakness or muscle atrophy.  A LOT of nerve irritation, like shaking just below the surface of the skin (the skin LOOKS fine), burning pain down my legs, electric feelings (thank goodness these have gone away) and strangely enough, when it's dark and I'm in bed, feeling like I am an astronaut floating in space--sort of disoriented.  As for tests--I can't be too specific about this because I don't know, really.  All the blood work.  Everything was normal, except a slight anemia--eleven when it should be 13.  Basic neurological exams, but no MRI--no one thought that was necessary.  Lots of pressing and prodding.  Sorry I can't be more specific--most of the rest of you are.  Oh, I had a LOT of muscle pain, too.  The pain is almost gone, but the nerve irritation is still going strong after two years.  I have tried everything--cortisone, anti-inflammatories, rest, exercise, no exercise, vigorous exercise, moist heat, a heating pad (the worst!), cold packs, acupressure, acupuncture, lotions, green tea, sea salt (from the Dead Sea!), massage (it can irritate), meditation, prayer, bonding with nature, just ignoring it.  Nothing really works.  Sorry I can't be of more help.  Will keep you posted and hope you'll do the same.  Good luck to all!  My thoughts and prayers are with you daily!

[ed]

while all this debate about PVS is all well and good, it seems like the prerequisite is some sort of chronic infection.  when I developed symptoms of this "syndrome" I appeared to be "healthy", ie no signs of any infections.  My guess is there is pleny out there that the medical community is ignorant of - one doctor I know had the nerve to admit that there are a number of increasingly hostile infections (viral) out there that they are unwilling to notify people about because they do not want to start a panic.  My advice is to do whatever you can, rest, acupuncture, massage, a few months on the beach at Rio, whatever makes you feel better.  My experience these past six months is that doctors are pretty much full of it.

[Laurie to Ed]

Ed, I couldn't agree with you MORE and it makes me FURIOUS!!!  Whether PVS exists or not is pretty irrelevant.  I think all of us here can agree on one thing--we feel lousy and it isn't in our heads!  Doctors seem to me to follow a pattern--they try to diagnose with all the requisite tests.  They try various treatments.  When nothing works, they proceed to the tranquilizers and antidepressants.  When that fails, they just blame the patient for becoming ill in the first place.  It's the patient's fault, NOT the doctor's--which of course, it isn't! Everyone on this Post is suffering and needs help and doctors aren't giving us the help and attention we deserve.  Yes, they ARE full of it!  You bet!  I've gotten more help from this board than from my doctor and physical therapist put together.  May we all recover quickly and safely!  By the way, I, too, had no apparent infection before all of this developed.

[To Ed/Laurie et al]

Couldn't agree with the two of you more. I have been a "campaigner" to legimitize this syndrome - whatever it is - in the medical community.  It needs a name, a prognosis, protocol of diagnostic tests, etc.  There are so many of us walking around with this - I wish neuro-virologists would focus in on it.  It is clearly some sort of virus or something along those lines with a propensity to damange the nervous system (central and peripheral).  I wonder if it isn't an enterovirus along the lines of which has just been discovered to be associated with ALS?

[C J]

Ditto here, guys.  Physicians are supposed to be detectives.  We hire them... we fire them when they aren't doing their jobs.  Throughout this entire Post-Viral thing, it seems our employees quit.  As employers we get the feeling that NOBODY is qualified to do the job.  You're absolutely correct about the medication aspect.  Tranquilizers (pure ****) and antidepressants (totally un-called for) contain no answers save for "cover-up".  The way we feel is no hoax.  We know how we feel, what we feel and where we feel bad when its going on.  We are not psychotic in any way, shape or form.  The condition is real and the field is wide open for anyone who wishes to be employed to do the job.  "Wanted:  Serious, dedicated researchers needed.  Must have lab experience and the ability to find answers."  Yall have a good day (or at least try) - C J

[Kev]

Now it's a Post Viral "thing" eh, CJ?..To Laurie, Ed and the rest..you understood my argument perfectly all along, thanks...ALL I was saying is " everything is a syndrome which amounts to little more than a wastebucket that leaves us in limbo...I'm simply tired of waking up every morning to the announcement of a "new syndrome" which translates to " could be anything but here's a label attachment..."CJ, I respect your side of the arqument and debate can only be progress towards solutions to our health problems...because blind faith will get us nowhere....that's for certain.

[Laurie to Everyone on This Post]

I think everyone is right except those who absolutel insist on calling it Post Viral Syndrome.  We don't know it's PVS--we don't know it isn't.  Doctors don't even do us the courtesy of trying to find out.  Sure they're only human, but when they dismiss us with tranquilizers and antidepressants and then even go so far as to blame US for being sick--something is definitely wrong here.  I didn't have a virus before I got this thing.  Maybe a virus did cause all of us to be sick, but until we know for sure, and until test can prove it, I'm not buying PVS.  It's a cop out on the part of the medical profession.  We're sick!  We deserve better and we should insist on getting the help we need!

[CCF Neuro[P] MD, RPS]

I hope the posting was chathartic for all.

CCF Neuro MD

[C J]

D. C. al fine.  Do not return to the Coda.   Yall have a good one!  C U L8r. - C J

[Laurie to CCF Neuro]

Frankly, I didn't find it at all cathartic to have complain that  my doctor is lousy.  What I would appreciate, and find much more useful, is for doctors to take our misery, pain and the ruination of our lives seriously and do something to help us.  I think it's pretty clear that the medical profession has taken a beating in the last five years or so and no wonder!  It's now become a doctor's mantra to "blame the patient" when things go wrong.  Well, it just doesn't wash.  Doctors should stop looking at their own bank accounts and remember their Hippocratic Oath instead.  If their didn't care to ease suffering their are plenty of high paying nine to five jobs around that require little interaction with others.

[Hillary to CCF Neuro and All]

I have to agree with Laurie.  It's not cathartic to HAVE to complain about the inhumane treatment we've been given by our doctors.  My doctor just says, Oh it won't kill you.  I wish it would.  Try, Doctor, living your life, your formerly healthy, active, happy life, WITHOUT the ability to exercise.  Watch your physical condition go downhill because you can no longer sit on a bicycle or ski or run.  Watch your marriage be destroyed because you can't go out with friends or make love with your spouse.  Watch all the enjoyment leave your life because you're so uncomfortable you can't even sit down and watch a movie or read a book.  If you've ever enjoyed travel, forget that.  That's an impossibility.  Watch yourself lose millions of dollars because you can't work, you can't fulfill contracts you've promised to fulfill because they require abilities that are now beyond your level of execution.  Watch your formerly happy and fulfilling life disintegrate into nothingness so that even your hands shake when you pick up a pen to write.  Every joy is taken from you.  Then go to your doctor and watch as he or she LAUGHS AT YOU AND BLAMES YOU for being sick so long and chides you for having a mysterious illness.  The only things left for me is death.  I'm just sorry I don't have the guts to end this misery myself and must wait on fate to do the job.  And PLEASE don't suggest antidepressants--I've tried those--they don't work.  And I wouldn't be depressed if I could only get rid of this miserable whatever.  The medical profession should clean itself up.  Helping people should be a requirement for the job.  Unfortunately it isn't and it seems the colder and more clinical one is the higher is his salary which is all any of you care about anyway.

[C J - 2 Doc RPS]

Dear Doc RPS:

A catharsis is the elimination of a complex by bringing it to consciousness and affording it expression.  Do you believe that this mysterious illness/dilemna/syndrome exists?  How many other posts have there been dealing with this same problem?

It seems to me that a focus on more understanding is needed from the medical profession.  If a patient is viewed as being a hypochondriac when their condition is absolutely real, they lose faith in everything your profession stands for.  These people are bringing the complex to your consciousness... affording it expression and all they get from your colleagues is a shaking head/a laugh/a verdict of blame, etc.  Research is needed for this pathetic state of health that has no name save for a ? mark.
The symptoms are clearly neurological in origin and have marked symptoms.  Please... in the name of medical research... make it something, and do it fast.  My diagnosis of Guillain/Barre was made so, after many head shakes, laughs, etc...(one female resident asked me with a laugh, "If you just tell me how many times your face was hit it the fight, I might could help you!"... one week later I was down with a respirator on stand-by)

Doctors are detectives and these people need answers.  Doctors are human, so pass the word to be humane.  Medical research is rich, so pay them overtime to find the solution.

Sincerely,

C J

[To Everybody/From Maureen]

Wow - a lot of pain and frustration here. I can relate.  These symptoms have ruined my life too.  There are times when I just can't believe I have this.  I was perfectly healthy till age 35.  The worst of it is no diagnosis.  I don't even tell people anymore.  What do I say - I feel like **** all the time and nobody knows what it is?  

It has really taught me so much.  Doctors definitely don't have the answers - particularly when it comes to neurology.  Which I think would be fine if they just acknowledged that.  What would have meant a lot to me would be if my neuromuscular doctor had said even just one time, "Wow you are really suffering, I wish there was more I could do for you, Maureen."  

Recently I had double externa otitis (outer ear infections).  This was the most excruciating thing I've ever experienced.  I went to the ER where they gave me the wrong antiobiotic (zithromax, which doesn't even work on otitis externa).  By the next day I was even worse and now throwing up from the darvocet they had given me for the pain.  My husband found an ENT near our home who saw me emergently. I was laying in his chair crying and convulsing in pain (this is someone who has had three babies without any pain medication).  It felt like someone was scraping out the inside of my ears with shards of glass and breaking through my eardrums with chopstix.  He walked into the room, and said, "I'm going to give you a minute..." and walked out.  I thought my husband was going to punch him out!  This guy could not deal with my suffering and emotion on any level!  Granted, he did get me "straightened out."  I could not believe what a giant nerd he was!  Complete lack of interpersonal skills.  I suppose that is just not taught in med school.  

As for RPS, he is compassionate.  He gives freely of his advice on this board.  You frequently say, "I wish there was more I could do for you/recommend for you" etc.  You always congratulate women on their new babies.  You say "I hope it isn't MS" and "Sorry about this or that..."  Please don't take our catharting as a personal attack.  We do appreciate all you do for us.

[Kev(the fly in the ointment)]

Sounds like you have a lot of "anger" Maureen...( I believe that's what you said to me when I became the original"fly in the ointment" questioning all of this...interesting to see the change as the dreaded " groupthink" was avoided through excellent posts from Laurie, Hillary, etc...As for "a catharsis" CCF Neuro, I can add little to Laurie and Hillary's exceelent posts, as they have expressed my feelings exactly....Back to Neuroweb....

[Laurie to Kev]

Kev--Flies in the ointment are often the catalysts needed to bring about spectacular results!  Keep posting!

[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.

[To Kev/From Maureen]

Kev:  I am really not understanding what your point here is.  Let me clear you up:  I do have a potential diagnosis of Post-Infectious Autoimmune Syndrome or Porphyria given to me by the neuromuscular specialist who is evaluating me in Philadelphia. I am finding out which it is when I return in May.   Are you challenging her expertise?  I was sick with prolonged viral symptoms prior to my syndrome. Many many neuros acknowledge that it is not unusual for fascics etc. to come about post-virally.  Certainly I am not saying that is the case for everyone.  Please go back to the title of the original post HELP WITH POSTVIRAL SYNDROME.  That is how this discussion originated.  

Or better yet, why not go back to the MGH Board and continue your hero worship of Mark Anthony (the guy who wants to shove his fist down his mother's throat).

[Laurie to All]

Can we stop arguing about what it is and what it isn't and focus on anything that MIGHT help us?  I feel like h*** every day and I imagine all of you do, too.  The only thing that seems to help me at all is VERY vigorous exercise.  That stops the shaking, etc. but I am getting so emotionally deflated by this that I don't know how long I'll be able to keep standing, let alone indulging in vigorous exercise!

[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.

[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.

[Laurie to All]

Yes, I think everyone on this Post is suffering--in one form or another.  Post Viral Syndrome may or may not exist.  The problem with doctors, as I have found in my experience, is that they label us too quickly.  If it's PVS we need rest, but some of us may not be sufering from PVS, in which case we're not getting the help we need.  My doctor tends to blame me for being ill too long yet she does nothing to try to discover what is really wrong with me or how to help me feel better.  I know many others in the same boat.  If it's not going to kill us outright, doctors tend to dismiss us and not care how much we suffer.  I can't argue with the fact that emergencies come first, but I do think doctors need to come to realize that the QUALITY OF LIFE IS IMPORTANT, TOO.  Whatever is wrong with me, be it post viral or other, it has destroyed my life and taken away everything I once had.  The worst thing is--I see no end to my suffering in sight.  Horses are shot for less suffering than I've gone through.  For the past two years, I haven't had more than 2 hours sleep at any one time.  I haven't been able to leave my house except to go to the doctor.  I haven't been able to sit down and relax.  My husband said I have been ill too long and he left me.  I suppose I should be glad to be rid of a person like that, but I did love him and feel extremely hurt.  This makes it doubly bad to then go to the doctor and have her say, "I'd like you to just forget it."  Forget it?!  It rules my life!  This Forum is our chance to let doctors know how we feel--to put them on notice.  We need them but they don't need us--individually--so they dismiss us.  It's a sorry state of affairs.  Maureen, I am not attacking you, I have no reason to and you seem very compassionate but I have my doubts about the integrity of CCF Neuro and his intentions.  He may very well be as compassionate as you say, but right now my bet is that this is just part of his job and one he really doesn't like to do.  If I'm wrong, I apologize.  Too much pain can render us less than human, so I beg everyone's indulgence.

[C J]

Each and every one of us has our own stories to relate.  Mine happened to be Guillain/Barre.  I can only say that I am certainly glad that a diagnosis was made and even more grateful that it had a name.  In the beginning, this post questioned a certain subject.  Go back and have a look.  Amy wanted a recomendation on what to do for post viral syndrome with neurological complications.  Comments began piling up and everything was cool.  I made my comment.  There was a discrepancy about "rest", but was resolved and all was fine.

Instigators are not, and never will be an inspiration to anyone but themselves.  Lashing back gains nothing except more cruelty in return.  Why?  I think it's because all cruelty stems from weakness.

I want you all to know that I sympathize deeply with your dilemnas.  I wish I could do something more than just read your pain described in words.  I would love nothing more than to know that every single one of you indeed, recovered fully from this torture that has, and has not... a name. - C J

[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.

[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 Kev--Thanks]

Thanks Kev--I will--hard as it is sometimes.  See you later.

[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

[TINA]

I was a healthy 39 year old woman until a few months ago.  It began in September when I was rearended which left me with neck shoulder back pain and a vibrating in my ear.  In November I came down with Shingles and then in December I was rearended again which aggrevated all of the other symptoms.  I have seen many doctors and go to therapy 2-3 times a week.  I now am so tired all the time that sleep is all I think about.  My memory is terrible, I have severe headaches and joint pain and the pain and vibration in my ear at times is unbearable.  I am on two antidepressants and have begun prolo therapy which in itself is very painful for days.  Could I have PVFS from the shingles?

[CCF Neuro[P] MD, RPS]

Dear Tina:

One can get very fatigued with shingles.  But once the disease clears, you should be back to your normal self.  I guess one could get a post viral syndrome from shingles.  If you were immunocompromised, that would certainly be a good possibility.  Anything is possible in medicine, but I would say that a post viral syndrome would be unlikely.

CCF Neuro MD

[Kathy]

I feel so very sorry for each and every one of you. Life can really be agonizing, can't it, whether it's someone we love who is suffering, or ourselves?

I hope you can all find an answer to your problems. My heart goes out to you all. I certainly understand after watching my son go through what may or may not be the same or similar thing. I can detect the frustration, pain, feeling of helplessness and hurt in each of you, and I understand it wholeheartedly. This is an interesting post with a variety of excellent points. I admit to being in a total quandry myself about the postviral situation, in our case at least.

I wish each of you the very best, and I am so sorry to know you have to go through such agony.

[CCF Neuro[P] MD, RPS]

thanks for the comments.

CCF Neuro MD

[To CJ Form Laurie]

You didn't offend me, CJ.  I was just afraid that I had offended you!  I'm sorry.  CJ, your story is so horrific I could barely read it but I forced myself to do so, multiple times, and I come back to it everytime I start to feel sorry for myself.  Compared to your problem, I have glowing health.  I do not know how you did, or do it.  I suppose because you have to.  The only other choice is to give up and you seem to be a fighter.  I wish you the very best.  Absolutely.  And thank you to all those who wished us all well.  We appreciate it.

[CJ - to Laurie]

Pain plays in many arenas, and each arena plays many different rosters of pain.  You're right.  I am a fighter.  If I did'nt do it, who would?  Yourself... is all you have.  And life?  Is what you make it.  Sure, I have some real rotten days.  Why?  Usually due to weather.  Pain thrives on low pressure.  The longer the LP front lingers... the longer I'm down.  Getting through it is the challenge... and I do so love a good fight.  Keep your chin up, Laurie.  And watch the weather.  You will be amazed at how many negative waves are born when the barometric pressure falls below 29.8.  Have a good one.  Email still stands. - CJ

[CCF Neuro[P] MD, RPS]

thanks for the comments.

CCF Neuro MD

[maggie]

I had an illness, not sure what, with a high white blood cell count.  Was dizzy, felt like throwing up on occasion, hot and cold chills, shooting pains inside my body that would knock me over, itching all and I mean all over my body.  Came down with a rash which the doctor thinks was shingles.  All of this took about 4 months.  THEN the neuralgia.  It has lasted two years and I think it may be finally clearing up.  Yes, I had all the symptoms:  burning pain like a sunburn, red areas on my skin, needle stabbling (quick) pains, numbing and tingling like crazy, and some internal pain like I had been kicked by a horse.  I couldn't have intercourse - that started everything back up again - to the max.  I couldn't take hot baths, sunbathe, lay in a tanning booth or exercise.  I have found a cure that worked for me.  Buy ZOSTRIX cream (this is a hot pepper cream) and put it on the areas that hurt you about 3 times a day.  It takes a few days to kick in.  In the meantime, stay away from heat, hot baths (I take luke warm shower), no tanning booths, etc.  You don't have to stop exercising, just find exercises that don't irritate your "special" areas.  Long walks are good.  Don't really rest, but take it easier than you did before you got ill.  In the beginning Elavil really helped me.  It tends to put weight on you, so I cut the lowest doseage in half and took Metabolife along with it (just one a day).  Oh, and try to keep yourself out of stressful situations the best you can.  Try to make light of the things that aren't really life threatening in any way.  Stress brings all of your symptoms back.  Also, Daypro, which is an anti-inflammatory worked for me on occasion.
Believe me, this stuff is what cures you.
I was so ill that I thought I was going to die.  I am almost normal again.

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[Gina]

Hello,

For anyone who reads this who has post viral syndrome, please email me at ***@****

I had a baby 7 mos ago, my problems began 3 mos ago, as I type this my left face is numb,  sometimes its on the back of my knee, or inside of arm.  Face is not sagging but feels like it.  Im devistated.  Had normal brain MRI, ANA blood work,  neuro exam MS  almost ruled out.  

I had a horrible bout of the flu when I was 6mos pregnant.  Then again I had the 24 hour flu when my baby was  2mos old.  It all happened after this.  NOt sure, will it ever go away?  Please someone email me!  I feel like my life is over now!