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.

[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!

[CCF Neuro[P] MD, RPS]

thanks for your 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 the comments.

CCF Neuro MD

[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

[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.

[CCF Neuro[P] MD, RPS]

thanks for the comments.

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]

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

[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?

[Laurie to Kev--Thanks]

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

[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

[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.

[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!

[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]

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.

[Laurie to Kev]

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

[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....

[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.