Post-Viral Syndrome

[jan]

Drs, i have been dx with something called post-viral syndrome from several doctors after a case of the flu 6 months ago. While the symptoms havent worsened in the last months they havent got any better either.

What exactly is a post-viral syndrome? When i ask my doctors they really dont even know and this scares me. You would think with all the advances in medicine that someone could tell me why this sort of reaction occurs after a simple flu virus.

What is the prognosis for this condition?

Jan

[CCF Neuro[P] MD, RPS]

Dear Jan:

I am sorry your having symptoms.  I wish there was something to tell you.  There are many diseases we really do not fully understand.  Most likely post-viral syndrome is a collection of effects that a particular virus or viruses have on the body.  Some may be an autoimmune process in which the virus induces antibody formation or T-cell formation and this attacks the body.  It might also be a direct effect of a virus on the various tissues in question.  Examples are such as MS, some dystonic reactions, some cases of tics, etc.  As far as how long your symptoms will last is unknown.  It depends on what the etiology of your symptoms might be.  I am sorry we don't have a better answer.

Sincerely,

CCF Neuro MD

[skipatro]

What are your symptoms?

[jan]

Twitching,cramps,pain,vision problems,hives,tremors,dizzy spells,ears ringing.. those are the key ones.

[skipatro]

Many folks out there have the same problem; this has been described as post viral illness and/or benign fasciculations.  Some theorize it is caused by the immunue system going wacky and attacking the nervous system, etc. after an illness.  I would like to invite/welcome you over to the MGH neurology forums specifically the neuromuscular forum where there are MANY, MANY people with similar complaints and problems, you will find much help, friendship and understanding there.  Almost all have experienced the same exact symptoms as you describe.  Hope to see you there.  If you cannot find us, just write back and I will try to put address here.  Good luck to you and God bless!

[skipatro]

Many folks out there have the same problem; this has been described as post viral illness and/or benign fasciculations.  Some theorize it is caused by the immunue system going wacky and attacking the nervous system, etc. after an illness.  I would like to invite/welcome you over to the MGH neurology forums specifically the neuromuscular forum where there are MANY, MANY people with similar complaints and problems, you will find much help, friendship and understanding there.  Almost all have experienced the same exact symptoms as you describe.  Hope to see you there.  Good luck to you and God bless!

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=Neuromuscular&number=65&DaysPrune=

[Douglas Theobald]

Hi Jan,

Here are some more links on "post-viral."

http://www.medhelp.org/mhli/search7.exe?jstart=1&;SearchArea=1&keywords=post+viral&Submit=Search!

http://www.medhelp.org/perl6/neuro/messages/C30957-25.html

Doug

[question for Tracy]

Hi,

I read your reply and I was curious are you saying MS is a post viral syndrome?  Im confused since I was told I dont have MS (alot of MS symptoms) and told I have post viral.  If MS is a post viral then what exactly is post viral syndrome?  Im just trying to get an understanding of how a virus can attack the nervous system.

Thanks so much for your time

[Rae]

Jan,

Lyme disease will give you those symptoms too and it will start off with a bout of flu a few weeks after you are bitten. (You don't always see the tick, or get the rash that they talk about.)
You might want to check out http://www.LymeNet.org/ to see if this fits any better than other diseases.

You need to do a lot of reading yourself since most doctors want to rely on test resutls and not the symptoms in making a diagnosis. It is something you really need to know about yourself.
Goodluck!
Rae

[Amy]

Has anyone ever heard of sinus tachycardia being a symptom of post viral syndrome?  I had a virus about a month ago that included tachycardia (125 bpm) as the first symptom followed by a high temp. for several days.  My heart rate has slowed but is still a little too fast.  Wondered if anyone has had a similar experience.  I'm seeing a cardiologist and hopefully will get my heart rate down to normal soon.

[giig]

Re: Post Viral Syndrome.  Much of the research into post-viral syndromes, variously called Chronic Fatigue, Fibrimyalgia, Myalgic Encephalytis is focusing on the GI tract.  It's maybe not the full story but it is a relevant factor.  If you have been plagued with the symptoms of CFS/FMS accompanied by muscular jerks, twitches, spasms, or internal movements of an unknown and difficult to describe nature, sometimes sore & painful, sometimes not, please e-mail me.  There is a promising, though most unusual and still rather experimental procedure being used by my current gastroenterologist which is getting significent (no, not 100%) success rates.  I have spoken to people, one woman living close to me in particular, who after ten years and almost at the end of what she could endure who says she has "my life back again".  For myself I have had slowly worsening symptoms for six years until now I have these muscular movements practically top to toe and with clear involvement to  the digestive process.  I've been through the lot blood tests, scans MRI's, this testing, that testing, every alternate medicine procedure you can name and full standard GI tract examination.  All to no avail and an outlay of thousands of dollars.  Well this procedure is different from anything tried before and probably from anything you've ever heard of. I begin it next week if you would like to be informed as to its outcome please feel free to email me.  I might add that this particular gastro is also a major researcher with papers published in various medical journals, e.g. American Journal of Gastroenterology Nov 2000 Vol 11 I think.  Believe me I have no other alternative that to help others who are going through what I been through.  I wouldn't wish it on a flea!

Nina M
***@****

[Tia]

Hello....I have been following this site for some time, and some of you may recognize my name.  Last year I was told that I had this "post viral syndrome"  I had a bout of pneumonia in the beginning of 2000, then "fifth disease" in March....and the symptoms have gotten progressively worse...the muscle cramping, joint pain, burning hands and feet and face....
Well...it has been almost a year of constant testing and they finally found something....My RH factor is up, meaning that I have Rheumatoid Arthritis....and funny thing...I went to a Arthritis site...and there are many others who have had the same journey as I!!!
SOOOOOOOOOOOO.....ask for a RH factor blood test as well....
Remember, Arthitis is also a disease of the Immunities of the body attacking themselves.....so it all sort of makes sense...Anyway....this is another idea and thing to check for those of you who are suffering from this terrible "syndrome".
Good Luck
Tia

[skipatro]

Did you have muscle twitching Tia?

[HELP Me Doc...Please]

Yes...I did have muscle twitching...and muscle cramps that would jolt me outta bed...with the burning sensation in my hands and feet...and the fatigue...and and and...all I can say is "this sucks" sorry...but like most of you, I am so tired of being sick! I hope all of you recover quick, for I wouldn't wish this on my worst enemy!
Good luck to you all
Tia

[Karen]

Amy, In November, my healthy 10-year old daughter got a virus (upper respiratory, fever) missing 5 days of school.  She started complaining of shortness of breath and her heart beating out of her chest during the end of the week.  I took her back to the doctor and her pulse was 138 with elevated blood pressure.  We ended up with an evaluation from a pediatric cardiologist.  Echocardiogram showed normal function with slight mitral valve prolapse and regurgitation (which we were unaware of).  Bottom line is she has sinus tachycardia which the doctor feels is a direct result of the virus. He has her on propanolol to lower the rate. Blood tests for thyroid and anemia are normal as well as a pulmonary function test for asthma. She has been switched to a couple different medications due to the fact she is still experiencing headaches, difficulty falling asleep, and shortness of breath upon even the slightest exertion.  She has been unable to participate in normal activities and until now I was curious as to why 3 different doctors aren't quite sure what is going on.  Where do we go from here?

[Jonathan's mom]

Karen:

Mitral valve prolapse is autonomic dysfunction. Your daughter obviously has ANS problems. You might want to visit the site for the National Dysautonomia Research Foundation at www.ndrf.org. There is a great deal of info about these problems in addition to personal experiences.

Good luck; I have a teenager with a host of strange problems following an EBV infection (connection?). There is also a new test for ganglionic antibodies developed at Mayo Clinic to determine whether the problems are autoimmune in nature.

Just a thought.

[Leesa]

re; all of the above. simialar sypmtoms and others, can anyone help? I had glandular fever on and off for approxamately three years, i am a strange individual who gets things that you are only supposed to get once, more than once, eg measles etc. Anyway, back to the point, does anyone experienceing above symptoms etc get this shortness of breath thingy at night? i 'self diagnosed' myself, but it's scary when it happens, doctor seems to agree it is some sort of anxiety/panic atack, when i get it i wake up and i can't breath properly,sometimes it feels like their is a blockage or narrowing in my airway, my heart is going really fast and sometimes when i feel this coming on {i dont always wake up with it, sometimes i feel it coming on as i'm falling asleep) i feel a sort of shakey feeling that is hard to decribe all over my body including in my breathing but its not like a tremor, or shaking hands etc. also the strangest part is i feel like i'm falling, or others like i am pulling myself out of a deep dark pit,{not the same sort of feeling like when your sucked out of sleep when the phone rings or such) i almost feel like i am escaping death-strange, yeah, but that's what it feels like, maybe i'm just a hypocondriac, but i have other 'weird things' some similar to above... especially nina murrays comments on strange,internal movements that are not easy to describe, it began when i felt a strange sensation in the backs of my lower legs, mostly at night, the only way that i can think to describe it is it felt like somehting moving and, 'bubbling' through my veins, now i have a 'weirdness' in neck area, i feel this wierd tightening sensation sometimes, or a fuzzy feeling of warmth in my neck area, sometimes in my head as well, and at night the above mentioned breathing thing goes with it, the feeling of narrowwing. sometimes i hear/feel a rushing sound or my heartbeat in my right ear. perhaps i am just clutching at straws, but could these be symtoms of post viral, is glandular fever a possible cause? or does anyone else experience anything similar.

thanks in advance, sorry 'bout length but i just discvered this site and i guess i got on a roll so to speak, oops, im not normally so talkative, i'll stop now, but thanx.

[HELP Me Doc...Please]

Wow....this is amazing to hear...yes, I have those same sensations of blood or something rushing through...in my ears and the sensation of warmth and pressure in my head.  I, too, feel like I have "anxiety" sometimes at nite...thinking that they may be "night terrors" I don't know...this is really is getting to me.  Please, let me know if anyone ever finds out about this stuff...and good luck!
Tia

[Jonathan's mom]

You might want to ask about having two things done: 1) a 24 hr. holter monitor and 2) a 24 hr. urine collection for catecholamines and metanephrines. An overabundance of the latter will cause many symptoms you describe. The holter monitor measures your heart rate during this 24 hr. period and records what occurs. Glandular fever (also known as Epstein-Barr) virus remains in the body for life and can reactivate.

Good luck.

[Cher]

Do you have any coal, oil or gas burning appliances in your home?

[mel]

i have many of these same symptoms
i think circulation may be a factor--falling down feeling etc.
blood suger in the shaky feeling.
infectious in the backs of the legs.
The feeling of escaping death could be a message from your body, all illnesses are not detectable by current medical practicioners.
i too feel that and have learned to trust my feelings as they have proven valid tools.
keep searching
ps, try chicken noodle soup, it may help the falling down feeling as it containes salty water which increases blood volume.

[Bits]

Well, I am relieved to see others share my dilemma. I am an RN. I am sorry for all of your symptoms and subsequent worry. However, It certainly is nice to have company. My symptoms began in January with complete vision loss which would last about a split second, and occurred on maybe five occasions, total. In february, I developed hand tremors, dizziness, and slurred speech which sent me to a neurologist in a hurry. I have other symptoms, such as difficulty swallowing (which I have experienced intermittantly for the last five years). Had EEG and MRI of brain and cervical spine=normal. I have bulging discs of c4-c5 and c5-c6.
The vision loss is consistant with a phenomenon known as Amaurosis fugax, which is seen in another phenomenon know as carotid dissection-for which I was tested (MRA of neck vessels, MRI of neck, carotid doppler, transcranial doppler=allnormal). So, still no explanation for my symptoms, which include the "panic" (I do not like this word) symptoms some of you describe.  
I have done a lot of reading and of course I can scare myself pretty badly.
Well, I noticed a "lesion" (for lack of a better word) in my mouth, and noticed white, mucousy patches in my throat. I also have had bellyaches, which occur only at night. I stumbled upon some info on the internet on candida yeast. It turns out this sort of infection in your body (like in your GI tract and elsewhere) can cause difficulty swallowing and neurological symptoms. I went to my GP, who dismissed me. I have also made an appointment with an ENT to look into my esophagus. I began taking supplements to destroy the candida (if that's what I have) and see if it relieves my symptoms. This is the fourth day, and I think I am noticing a decrease in the swallowing difficulty and a decrease in the size of the mouth "lesion".  The literature says, while the yeast is being killed off you can actually have an increase in symptoms, which I am, neurologically speaking. One of the supplements I am taking claims antibiotic properties.  
The other important thing to note, which is most relevant, I believe, to this site, is my nine year old son is having similar symptoms. (I haven't given him any suggestions about what I am experiencing). Specifically, he has had episodes of tremors, and difficulty breathing. He also has bellyaches at night. This would seem to be related to a "viral" exposure.
This is all a bit scary, yet a little reassuring, in that, hopefully, it will all pass. I hope this helps someone.

[abby]

I found it very interesting to read about all of the above. About 10 years ago after a week long stomach bug, I still wasn't feeling quite right.  I had frequent diarrhea and stomach rumblings.  One night at dinner, my heart started pounding and I thought I was having a heart attack.  After a trip to the emergency room the doctors told me I was probably coming down with the flu.  To make a long story short, I was out of work for 10 weeks with many strange symptoms, I could feel my eyes focus, my stomach contracting when I ate, trickling sensation up my back and in my scalp, heart palpitations and strange spells where I felt that I was going to die.  I went for many tests and finally found a doctor who told me I had post-viral autonomic dysfunction - he said that the stomach bug or virus that I had affected my autonomic nervous system.  I slowly got better (the heart palpitations lasted the longest.)  It took me a full year to recover completely.  Two years ago I was diagnosed with rhuematoid arthritis (another autoimmune disorder) and recently found out that the problem I have writing is something else (writers cramp - a focal dystonia).  I can't help wondering if this is all related.

[Nickie]

Hi out there,
While searching frantically on the net for anything on post viral headache syndrome, I came across this sight. My 11 year old son was finally diagnosed at Duke after 5 months of running here and there.  The problem is that no one seems to know much about the syndrome. He came down with a flu-like virus in Dec., 2000.  ALong with all the typical symptons, he had dizziness and a debilitating headache (he describes it as stabbing pains behind both eyes)that have not let up for even one hour since then (except when he's sleeping)!!  His life has consisted of lying flat on his back in a dark, quiet room, for almost 6 months now.  He even needs help walking to the bathroom.  We have a great Ped. Neurologist at Duke (with 37 yrs experience) but none of his "tricks" have worked. My son is currently on neurontin, elavil,florinef and acyclovir.  Nothing is helping. Has anyone with post viral ever had these debilitating headaches?? They are his main symptom. All testing (and we've done it all) came back normal. I would appreciate any additional inf. on websites, personal experiences, drs, etc. You can also email me direct at ***@****.  Thanks ahead of time!

[lc]

I read all of your stories and finally feel I am not alone.  I have no exact recall of a virus, except for the yearly ones the kids bring home, that I always get. I'm 40. I have had strange symptoms for 1 1/2 years now.  Every test, every specialist.  They can all tell me what I DON'T have, but none can tell me what I do have.  Symptoms:  constant headache, no relief.  Pressure inside my head, along with sharp stabbing pains, joint pain, extreme, extreme fatigue, dizziness, occassional fainting, nausea 24/7, reflux, slow digestion and evacuation, neck stiffness, slow heart rate(30,32) followed by rapid heart rate(150), smothering, can't-breathe feeling, only feel half-decent when laying flat, wake up at night with that same fright feeling you have described, like I'm narrowly escaping death. I do have:  thyroid, mitral valve prolapse, meniere's disease, reflux, cervical spondylosis with impingement and narrowing.  I've had MRI, CT scan, spinal tap, gall bladder, tilt table, stress-echo, 24hr monitor--all normal.  Endoscopy: positive for Helicobacter Pylori Bacteria and erosion of the esophogus lining-treated by antibiotics.  Does anyone know anything that might help...the doctors give up and revert back to anxiety..."you need a vacation"...how do you take a vacation when you can't stand in an upright position for more than a half hour?  any feedback, please let me know.  My best wishes to you all for good health.  Laura

[vernon]

I have an 18 month old daughter who was diagnosed with post viral cerebelitus.  This has been horrible since she cannot tell us what is wrong with her.  My daughter's symptoms started out when we noticed her falling and running into things head first.  We called the doctor they sent us for mri's, eeg's and tons of blood work.  Finally we were sent to a children's hospital where she was diagnosed with post viral.  Weeks later my daugter could not sit up or walk, her eyes started doing really bizzare things.  I think we are on the road to recovery.  We are going into our 8th week of this and the symptoms are still there.  My daughter is in physical/occ. therapy to regain her balance and to learn how to walk again.