Post Viral/Brisk Reflex's

[BJP]

In the post below Post Viral Syndrome was suggested. The symptoms I have of numbness and weakness and pain in feet and fatigue are waxing and waning. but basically consistant. Are you refering to something like CDIP or some other type of viral reaction. I know of Gullian Barre from many years as a EMT. So I know this does not present in that manner. I wonder about the viral thing because each and every time I contract a virus, shortly following its resolution I get these type of sensory symptoms and such that are very troublesome to say the least. My reflexs are brisk 2+ to 3+ and the strength is good although it feels as if my legs are weak. How would one DX Post Viral and what is the course. Can it get worse like GB, or is that unlikely after over 10 days of symptoms..Would this also cause concentration troubles and a foggy head with dizziness.
Thank You so Much

[CCF Neuro[P]-M.D.-RPS]

Dear BJP:

Sorry that your having problems.  Actually, reflexes judged to be 2+ or 3+ are within normal.  I would not consider them abnormal, especially if they are symmetric.  CIDP and GBS are autoimmune type diseases and not post viral syndromes per se.  They have distinctive antibodies are are quite consistent between patients.  We are unsure of what postviral syndrome really is due to.  There are no consistent lab findings with the exception of symptoms that are vague and nonspecific that occur after a viral illness.  Like any illness, the symptoms can wax and wane depending on the individual and circumstance.  Some people do complain of foggy thinking, but not all.

Sincerely,

CCF Neuro MD

[JamesT]

Hey there.  I am just writing to say that I have been suffering from a foggy head for months, and muscle twitches that come and go along with weak feeling legs, (very scarey cus i feel like im gonna fall when I walk) although I dont think they actually are weak!  also dizziness and tiredness, vision wobbles, and balance problems.  I did have a virus of some sortback in oct/nov last year, and have been leftwith these!!!  I am sodepressed but have had negative tests including a cranial MRI, so u r not alone and am assuming that it is post viral!!

[john m]

James, do your calfs ache? can you describe how you twitch?I
have similar symtoms after some viral thing also,do both sides ache? thanks, John

[JamesT]

hey, no my calfs dont seem to ache but they do twitch there. I do get pain in my muscles in the top of my legs tho.  a stabbing pain.  By twitch i mean and individual small muscle will move, like flicker under the skin and can happen anywhere, in my neck sometimes and can be quite painfull there!!

[Lady Jay]

Greetings Everyone,

I have been commenting on this forum on and off for the past three years now and when I deem it appropriate to speak up, I do so.  Post-Viral Syndrome is one subject where I voice my thoughts as is Guillain Barre Syndrome, Neurofibromatosis (Type 2) and Schwannomatosis.  I believe Doc RPS knows who I am as he offered his shoulder for support before and after my craniotomy in 99.  This forum is a fantastic and informative crutch of support.  It was then... and continues to be so now.

I have been commenting on "Post-Viral" for quite awhile and don't intend to stop now.  A "questioning" comment is needed... so I'm asking all of you now...

1.)  Have any of you rolled up your sleeve either at the physicians office or at work and voluntarily received a flu vaccine at any time in the recent past?

2.)  And if you have received a flu shot, how long did it take for your symptoms to begin?

I ask you all this question because I contracted the Guillain Barre Syndrome via a contaminated flu vaccine when I was just 18 years old.  It paralyzed me from head to toe and has hindered my life in one way or another since that day in Feb 1972.

People are like moths to the proverbial flame when it comes down to viruses.  Viruses are scary.  Face it.  We don't want to suffer from any of them.  Better to throw up a wall between "us" and "it"... no matter what the cost.  Confucius said, "The cautious seldom err."  Better to be safe than sorry.  (are we programmed or what?)  No matter what that cost, eh?  Unfortunately, the cost is the quality of the rest of your life.

There are no ways to detect a virus.  No MRI or CAT scan exposes them.  Don't confuse viruses with bacteria.  Viruses run courses.  Bacteria dies at the hands of an appropriate antibiotic.  And... there are so many strains of virus running amuck today it seems like we just keep passing them around like bank checks with guaranteed deposits.  We fear them, so we take action against them.  I have asked this question many times before on this very forum... and the response is staggering.

So, I'll ask again.  How many of you recieved a flu vaccine within the past year?  And if so, when did your problems begin?

Sincerely,
Lady Jay

[BJP]

Lady Jay,
   No flu shots here ever, wont take them because of people who i know contracting GBS from them and becoming very ill. I have had several virus's in the past few months I am struggling with a big one right now Upper respritory. I know that although my symptoms are subsiding for now, I am willing to bet they will be back again due to this current virus within a few days or weeks.Thanks for your great input, and keep alerting folks to the possible dangers..Take care

[Lady Jay]

Dear BJP,

You are welcome for the imput.  Keep that sleeve down and become real fastidious about handling ink pens belonging to other people and more especially the ones on the chains secured to the pharmacy desk.  Viruses thrive on them, so I use my own.  I don't like restaraunt silverware either.  That thought gives me the willies!  I prefer eating at home anyways, but a zip lock baggie with a little bottle of alcohol and some gauze in it tucked in the purse is pretty easy to use in that situation.  Don't get me wrong, I'm not some crazy person who is paranoid of "everything"... just certain things in certain situations.  The two I've mentioned are the ones that dig at me the most.  Any virus might stir up trouble.

You take care,
Lady Jay

[JamesT]

I had a Meningitis C vaccine about 3-4 weeks before all this started!  Do u think that has anything to do with this "post viral thing" which to be honest with u is mimicing MS so closely I am scared, but in light of clear brain MRI and neuro exams, I cant do anything but wait for what a doc calles a "hard symptom".  What do these docs want??  For us to go in paralysed before they belive there is something wrong!!  Sorry, had to get that off my chest!!:O)  Anyway, yea, the Meningitis vaccine!  What u think?

[Lady Jay]

Dear James T,

Menningitis (meningitis) is a "virus".  If all your scans, bloodwork, etc have come back with negative results and you were fine, healthy and well before that vaccine was administered, my opinionated guess is that you more-than-likely had a run-in with a bad one.  I hate it that you probably did.  What I hate even more is the fact that you have to keep plugging away on a "convincing mission" that there is something terribly wrong with you and the fact that you know beyond a shadow of a doubt that everything began after that one *****-of-the-skin.  Post-Viral is something that the profession is just now beginning to understand.  You are another one-of-many who has replied with an astounding "yes, I took a flu shot, was healthy before and a basket case after..."  Now you have a little more artillery to fire when you see your doctor.  If he/she wasn't aware that you took the shot, treatment both physiologically and mentally may change.  I wish you luck, James T.

Sincerely,
Lady Jay

[BJP]

Lady Jay,
  Tell me exactly what the symptoms are for post viral syndromes and how bad can they get, and how long can this last. I am beginning another virus now will it worsen my symtpoms..Thanks for your input and concern you are evry appreciated.

[Lady Jay]

Dear BJP,

Symptoms are muscle weakness, twitching, burning, tingling and numbness.  There may be hot and cold sensitivities on hands, forearms, fingers, toes, shins, calves and thighs.  There are headaches (migraines) along with light sensitive eyes.  Visual disturbances range from double vision to auras to ghostlike images (foggy).  I, myself still, 29 years later am very sensitive to flourenscent lighting. (I get in a store and out and wear amber tinted eyeglasses inside because it seems to neutralize best and very dark neutral grey outside)  This symptom has always disturbed me the most.

The symptoms get better but never go away.  Post GBS in my case left me with a partially paralyzed left side of the face, sensitive eyes and the temperature sensitivities on my hands and feet.  And I do have twitches that can be as pronounced as my entire leg "jump" all by itself for no good reason.  Happens with my hands too. (I've had my hand jump while writing checks right in front of the cashier.  I usually have to void that check.)

You need to take precautions like I mentioned earlier so you don't contract viruses.  They're your enemy now for the rest of your life.  I hope I've answered adequately and this helps you.

Take care,
Lady Jay

[BJP]

Thank You, The symptoms you describe, are as if your describing me. I also have very brisk reflex's and I am very fatigued and I feel like my eyes are jumping out of my head at times or darting back and forth. Or stuck in a stare. I am sorry to hear that you had to deal with GBS...Its a terrible disease...So anyone can get post viral syndrome without GBS amd I correct?  I am trying to avoid virus I carry hand sanitizer and i really don't eat out but with two small children one in 2nd grade and one starting Kindergarden its very hard to isolate yourself from virus. What happens,does each new virus serve as an activator of symptoms or damage done? Is this a one time illness with exacerbations due to new illness?  I appreciate you input and knowledge into this disorder for lack of a better word.  Thank You so very much for answering my questions and I wish you well.........

[JamesT]

Hey.  Does anyone know of a post viral syndrome discussion board?  All boards dont have it and i feel it is over looked.  Any contact would be greatly appreciated.  ***@****
I would  love to have more info on it.  I feel so ill all the time that its so hard to believe a virus I had 6 months ago could leave me this way!  Waxing and waning neuro symptoms and constant head problems!!  To the person above - i think post viral syndrome is only a "diagnosis" made once all other paths have been taken, like Chronic Fatigue Syndrome.  There are no tests for it, and would seem that if u had a virus, and feel this way after it is likely post viral!  Any virus can cause it if I am correct and symptoms can go from just feeling weak for a month or so after the virus to years of problems already talked about in this thread!  I am just hoping that I get better because I seem to stay bead, but have ups and downs within being bad all the time, and to get a doc who is understanding and believes u seems to be a difficult thing!  Best of luck!

[JamesT]

Can I ask BJP, have they ruled out MS?

[BJP]

Yes they have ruled it out..I recently had MRI of Brain and spine...No lesions of any kind...Of course this was without contrast as I allergic to it. I have had several MRI and CTs over the past few years all normal..No spinal tap..AFRAID of it.

All my tests are basically normal.
Take Care   BJP

[Lady Jay]

Glad to see MS negative.  Allergic to gadolinium, eh?  Well, some people are, just like some people are allergic to anesthetics like lidocaine and others to certain antibiotics.  It happens.

In answer to your last comment.  The problem with viruses is they are unpredictable.  They mutate with each pass.  Some grow strong, while others lose velocity and are just plain irritable.  Flu viruses require no special mode of transport (although certain utensils are great vehicles), they will manifest themselves regardless.  "Once-bitten" applies. The infection finds a home base (sinuses, lungs, etc) from which to operate.  From there it targets the CNS.  Residual problems always seem to focus on the old saying, "the first to go is the last to return.".  Your first symptom (say "twitching") starts when you first fall ill and it sustains and sustains and everything else gets better except it.  Two months later, you are still twitching... then it begins to subside.  With each new virus, you can bet the twitching will show up first because there is a foothold firmly imprinted in the past.  It's like the homebase is never really destroyed.  It goes dormant until re-stimulated.  

James?  Viruses and their aftermath stump physicians because there are so many strains and they change all the time.  More understanding is needed from medical communities.  Communication lags because of misunderstanding.

"We condemn that which we don't understand."

Take care everyone,
Lady Jay

[JamesT]

Hey guys. I have just been to see my GP again after about a month or so.  He seems to think that my symptoms are psycho-symatic (spelling??).  He thinks I may need therapy and that my symptoms are due to me!  He is however doing a blood test to check and see if I had glandular fever about 6 months back (which is basically when i started feeling weird!).  He seemed to dismiss post-viral though as he siad "u would be in bed all day!"  hmmm, why do these people not know anything about post viral syndrome, or are we just making it up in our heads???  He said that even if I did have glandual fever, then it still wouldnt explain my symptoms.  Does anyone know if virus like that of glandualr fever can travel to other parts, sy your ears and infect them, as after my bout of big glands and mucus on tonsils i GOT VERY DIZZY!  then came the other symptoms ive posted about!!
Any ideas on any of this?

[Lady Jay]

Dear James,

Here's a little story about when I started having symptoms of the Guillain Barre Syndrome.  I took the flu vaccine, then fell ill with the flu.  I never recovered.  It appeared that I was recovering.  I made 4 trips to the local ER.  The 1st trip diagnosis... "you have the viral flu- go home, take some days off work and rest."  The 2nd trip dx... "you have mononucleosis and iron poor blood- take this iron supplement and rest, rest, rest!"  The 3rd trip dx... "The xray of your skull revealed no tumors.  Perhaps your problem is mental?  Here's the number for a shrink."  The 4th trip dx... "If you'd just tell us who hit you on the left side of your face, then we would know how to treat it.  The numbness will go away on it's own... here's the number for a neurologist."  Then, to top the whole deal off, I was so sick after that last visit, I went to see my family doc.  He diagnosed it as a glandular infection which was causing discomfort and making my fingers and toes go numb.  Here!  Take this antibiotic and come back and see me in 5 days."  I never made it to the 5th day.  My parents took me back w/o an appointment because I had collapsed and could no longer walk..  He flipped out and said, "Holy Mary... I can't diagnose this in my office." and he called the ER at the hospital where he worked.  I went there on Emergency via private vehicle.  They put me on a gurney at the car door and my feet never touched the ground for the next 3 months.  Diagnosis?  Guillain Barre Syndrome.  Via a lumbar puncture... and my work fired me for "excessive absenteeism" which cancelled my group insurance and left me holding the bag.  NOBODY could figure out what the heck was wrong with me!  There you have it.  These viral infections are wicked and some are more wicked than others because they mutate into something far far worse.  I could go on and on here, but I had a diagnosis.  When I heard of post viral syndrome I immediately began asking questions about flu shots.  I was appalled by the figures.  7 out of 10.  That means 3 people got the flu without the shot.  Not all people get GBS... but I do think there is more here than meets the eye and that yes we do "condem what we don't understand."  It's easier to say it's mental and let it go at that.  I feel bad for eveyone who is victimized by any virus.  It pains me to know that doctors just pass it off... when it needs researched so we can get some answers.

Take care,
Lady Jay

[Ratbreath]

Hi! I'm new here. Here's my story:

I got 5 doses of tonsilitis starting in Sep 2000 until Nov 2000. I went to many doctors and had many tests. One showed my Iron count extremely low. Another showed me with Epstein Barr. I was enventually hospitalised because I couldn't swallow. They let me go and dx me with Tonsilitis although the specialist was certain it was Glandular Fever even though it didn't come up.
Anyway although it got a lot better, I was no longer sleeping all day, all these other strange symptoms appeared. Dizziness, black outs, muscle pain, severe headaches and the sore throat would often come back during that time. I was then by another specialist dx with post viral syndrome but later dx with chronic fatigue. I was put on Efexor anti-depressants which seem to have taken away all the muscle aches and headaches, although my sore throat still plagues me.

Yesterday I was just redx with post viral syndrome by a different specialist.

Trust me, I thought I was making this all up but then I would get worse again. It is not psycho-symatic. You would not be in bed all day.

I just have a question. Am I still infectious? I don't want to pass this on to other people? And does it change if the other person has had glandular before?

Thanks heaps!
My email is ***@****
Jay/Ratbreath