post viral syndrome - Neurology

by chris, Nov 21, 2000 12:00AM

Dear Lori, I have been through the same thing. I had a bad case of the flu that lasted about 9 days. About 3 weeks later all heck broke loose. I started getting veritgo, hands and feet tingling/numbess, muscle cramps in arm and chest. Since August of this year i have had the following symptoms that wax and wane.

Vision Problems (floaters,sparkles,ghost images) - i used to have great vision.

Twitching
Tingling
Leg Cramps
Hives
Rib Cage Pain
Odd Aches and Pains
Fingernail ridges
ears ringing
fatigue
loud bowel sounds
muscles that knot up
popping joints
severe anxiety,depression

It's unreal.. i used to a healthy 27 yr old male until this FLU.. or whatever it is.. I have had numerous blood tests, mri's, emg's and exams with nothing bad showing up, which im grateful, but i am still depressed i feel like this everday.

I hope one day i will feel better again.

Chris

by lori, Nov 21, 2000 12:00AM

Chris - YES YES YES.  Feels so good to know we are not alone and that the range of symptoms is real.  Did you actually get a firm diagnosis of anything?  What, if I may ask., was your initial virus symptoms?  Have all you mri's, etc. come back normal?

Did you get any Vestibular Therapy?  I did and I think it helped a little.

Are you on any meds - are they helping?  I am scheduled to go to Johns Hopkins in January but that seems so far down the road since this has all been going on since June.  I am improving but as you do, continue to have these odd symptoms that wax and wane.  have you been to any of the larger medical centers with any success?  How do your doctors explain this?  Have you come across any other helpful information?  This site has been the best for me to know I am not alone and I'm not imagining things.  I hope you will continue to improve.  Oh, it has been suggested that I take a B vitamin complex. . . good for the nervous system.  Check with your doctor, mabe it would help you.

I hope you begin to feel better.  THANK YOU for writing.
Lori

by chris, Nov 21, 2000 12:00AM

Lori, My GP thinks i have a depression/anxiety problem. My nuero thinks it post-viral and i will get better with time.

My inital virus symptoms where fever,chills,night sweats,fatigue,nausea for about 10 days.. some weeks later .. boom! hit me a like a freight train.

All of my tests have came back normal, which i am happy.

Do you have all the symptoms i have listed above? What kind of vision problems do you have?

I do feel somewhat better in the last month, but recovery is slow as you can imagine.

Chris

by LP, Nov 21, 2000 12:00AM

Chris, I wonder if you could have had viral meningitis.  Was a spinal tap done while you were acutely ill?  If your problem started with severe dixziness and vertigo, throwing up, with the other things, it could have also been labrynthitis which is how mine started and then just blew up into bigger problem.

I have several of the symptoms you list - visual disturbance - can't focus, eyes cross, can't see up close, black spot in right eye at times.  Had perfect vision before this; wierd rashes - actually more like raised snake skin in a pattern on face, neck, chest; goosebumps that come at any time; freezing feet; burning skin and a feeling that someone whacked me in the head - not a headache but a hollow dizzy feeling that leves me off balance and then starts a chain reaction of involuntary body movements.  My doctor says one of the systems that has been affected from the virus is clearly the cerebellum itself and has caused some fluctuations of emotion.  While I do not "feel" depressed or anxious, my body is physiologically responding with such symptoms - sleep difficulty, weight loss, worry, thus the medication.  Of course I do have anxiety over this just because of the duration and the unknown!  It's reasonable.  I am also seeing a counselor to help with the feelings of disbelief that this could happen top me a health, high energy 42 year old.
My doctor says not much is known about post viral synndrome.  Much of the reading material uses chronic fatigue syndrome synonomously.  While I'm somewhat tired, I don't believe I have those classic symptoms.
Tell me more.
I hope you continue to improve.
LP

by Joan in Maine, Nov 21, 2000 12:00AM

It's been a year for me, now. I was diagnosed by a rheumatologist about six months into this with post viral syndrome. He expected that it might take a year to resolve, but that isn't happening.
I think I've had every test known to man, but not much else of interest has shown up, except degenerative disc disease that might account for some of my symptoms. I asked the rheumy if this was the same as CFS, and he said 'it's a cousin'. My PCP doesn't think it's CFS.
Not much info out there, and that adds to the frustration, I think. Hope you folks do better than I have!

by chris, Nov 21, 2000 12:00AM

Dear Joan, can we have your story? Or maybe some symptoms? Any Vision problems?

Thank you,
chris

by Amy, Nov 21, 2000 12:00AM

HI ALL,

I had a severe case of sinusitis in December 99 and Jan. 00 and had vertigo along with it, caused by a virus. I have had most of the same symptoms you discribed ever since. I have been taking Paxil since April, for the depression and anxiety and also menopause. One day you feel okay the next terrible. I hope that it goes away soon. I hope you all feel better soon also.

by HELP Me Doc...Please, Nov 22, 2000 12:00AM

Wow....I have been reading this site for 9 months now, hoping to find answers with my illness....and reading your posts here has made me feel a bit better. I guess misery loves company eh?
I had Pneumonia Jan00 and then a child virus called "fifth's disease" in March...and since then I have had the incredible and awful symptoms of burning hands, feet and face; terrible joint pain that sent me to the emergency room a couple times; a strange rash on my hands; and eye problems.
I, too, have had massive bloodwork, MRIs and Neurology testing, all within normal limits.
My doctors have made me feel like this is psychological and nothing physically is wrong.
I just want answers....and to know there will be some relief soon.
I wish you all good luck and quick recovery. Please keep us posted, any of you who find answers and relief!
Tia

by Doug Theobald, Nov 22, 2000 12:00AM

Hey Chris,

Starting on Oct 4 of this year I suddenly came down with all the symptoms you listed. I also had/have a mild intention tremor. It came on after a 3 week long "flu." My symptoms are *gradually* clearing up (its been 7 weeks now), but they come and go with good days and bad days. My GP first thought it was "anxiety" - something I've never had any problems at all with before (I am a 30yr old male). My neurologist has diagnosed me with an acute post-viral polyneuropathy, perhaps a "mild" case of Guillain-Barre syndrome. Evidently milder cases of GBS are much more common than many think and are somewhat overlooked by the medical establishment for several reasons. I know this thing I have could be much worse; nevertheless it's been hell. Your case sounds so similar to mine I wonder if we both caught the same bug. I hope you have somebody looking out for you. My wife has been a life-saver for me. Feel free to e-mail me just to talk or get some of the info I have found.

Hang in there,

Doug

***@****

by chris, Nov 22, 2000 12:00AM

Dear TIA, have you improved any at all? Do you experience severe cramps in arm/chest and legs? I sure do..

Chris

by Joan M., Nov 22, 2000 12:00AM

Chris, I have an 'embarrassment' of symptoms, some have resolved.
In November of last year, I had a bad head cold, followed by two weeks of nausea. Right before Thanksgiving, I was having pains in the quad muscles of both legs-felt like I'd been climbing mountains. This went on for a few days, followed by vertigo, followed by severe weakness in my legs. Saw the doc then, he did some bloodwork, said I had a virus and it would be better in a couple weeks. He also made an appointment with a neuro, just in case it didn't. Saw the neuro about a month later. He thought it might be mild Guillain Barre, but ruled that out with an MRI of the brain and Cspine. He also thought it was a virus and would resolve quickly.

During December and January, I still had the vertigo, the weakness in my legs, and then the arms. Had a constant headache, sore throat, body temp was in the mid 90's. Slight rash on my neck and upper chest. Had a tremor in my hands and head. Had double vision for several hours. Lost feeling in the toes on my right foot. Was freezing all the time, and if my toes got cold, it took hours for them to warm up. Strange sensations in my legs-like there was water on them, and a cobwebby feeling on my lower legs. Also started having urine retention. Went back to neuro, he did an MRI of the thoracic spine. No abnormalities
In January, the joint pain set in. Both hips, shoulders and jaws. Also, constant pain in the tissue between my ribs. Doc did a rheumatoid blood panel-negative.

Doc sent me to an infectious disease doc, who did a second Lyme test-negative. Finally saw a rheumy in May, and he diagnosed me with post-viral, after running another 14 blood tests that were all negative.

In June, I was starting to feel better, but relapsed. Told my PCP this, and he sent me to another neurologist, who suspected myasthenia gravis or myositis, but that bloodwork was also negative. She did an EMG on my weaker leg, which showed abnormalities. Had an MRI of the lumbar spine, which showed degenerative disc disease, which was no surprise-I've had back trouble for years. She was noncommital as to whether that was causing the urine retention or my leg weakness, so I still have no answers there. She also ordered a spinal tap, but has never called with the results, so I presume they were negative.

All this, and unrelenting fatigue. I go back to bed in the afternoon and sleep like the dead for 2 or 3 hours.

Some things are better-the tremors have ceased, unless I overdo. I'm a bit stronger, but still can barely lift 20 pounds. Can't do too much walking. The vertigo, for the most part, left in June, but I continue to have gait problems due to the reduced feeling in my feet.

I've been on a bunch of anti-anxiety and anti-depressants, which seem to only make me dizzier and tireder. Had to stop taking Celebrex for the joint pains because I developed an ulcer.

Doesn't this just sound pathetic! *grin*

by lori, Nov 22, 2000 12:00AM

Hello all,

I sure am glad I finally had my question posted because not only was the insight from the MD helpful but you all have made me feel better just to not be alone in this.  Every doctor I've spoken to so far tells me not much is known about post viral syndrome but it sure sounds like each of you ( and me) have very similar symptoms.  It does indeed seem to be a matter of time.  I'm in my sixth month of waxing and waning symptoms as well as new symptoms.  While it's puzzling and frustrating and dibilitating - can't wait to be able to drive - I feel some reassurance from the fact that my PCP says most case do eventually resolve and it is not known to develop into anything else.

I do hope for improvement for all of us.  This is a good therapy too - talking with one another.

TIA - tell me about the rash on your hands please.  I have a bizarre skin condition on temples, neck and chest.  Also very interested to find someone else had the urine retention problem.

This is really a puzzling ailment.  If anyone has found any other sources of info, please share.

Thanks to all for being so open.
Happy Thanksgiving,
Lori

by Joan M., Nov 22, 2000 12:00AM

Lori, for what it's worth, about the urine retention, the rheumy was puzzled by that one. I suspect that it's related to my spinal condition, but the neuro was noncommital about that, so I'm guessing.

You were asking about vision problems. I was extremely sensitive to light all last winter, that's better now. I do still see halos around lights. Had an eye exam last month and that was normal. I have spells where I have difficulty focusing on print-it's not exactly blurry, almost as if I'm trying to read through a film.

Got a weird rash on all my knuckles, too. Red and dry. Doc says it's dry skin and to use a moisturizer. Now I have red knuckles that are moisturized, LOL!

Happy Thanksgiving to you, too! I'm thankful that my brother's cooking it! :)

by HELP Me Doc...Please, Nov 22, 2000 12:00AM

Wow, this sounds like an epidemic.  I, too, wonder if we had the same "virus"  I have searched the net for more information regarding "post-viral syndrome" for my doctors can't give me a lot of answers.
In regards to my rash on my hands.  This only appeared on my hands.  I thought, as did the dermatologist at first, that these "bumps" were a "viral" wart-like syndrome.  They were raised bumps, not really red, and slightly itched.  They were on my fingers, palms and even a few on the backs of my hands, and they hurt to the touch.  This made it difficult to do any work with my hands.
I would love to find out more information in regards to post-viral syndrome.  If anyone knows of info on the site, please post in here and let me know.
I wish the best to all of you poor souls that are suffering with this as well.
Tia

by maggie, Nov 22, 2000 12:00AM

My daughter suffered from post viral syndrome 2 years ago. The experience was a nightmare because we could not find medical personnel to acknowledge that her problems were not psychological for quite some time. She was 12 years old and had never been sick other than a common cold, but following a case of the flu she could not seem to rebound. She had low fevers, severe muscle pain in her upper body and shoulders, nausea. In time she suffered from sleep deprivation which aggravated the sympotms. We finally found a doctor who diagnosed her problem. The treatment was a tricyclic antidepressent and something for pain. In the long run, it seemed only time really helped. She eventually quit having symptoms about six months following the initial illness.
What astounds me is the number of people in the medical profession that have NEVER heard of anything like this.

by Gary, Nov 23, 2000 12:00AM

Hello All,

My 2 cents... I've been jackin' around with this post viral thing for two and a half years now. What a royal pain! Like you folks, I've had all of the tests and many doctors. They kept trying to tell me that I was depressed(old stand by). It seems as though some doctors have lost the idea that medicine is a science. I think that they look at diseases and abnormalities as everything that has been discovered is fact. Everything else is BS. For me, the only doctors that didn't think that I was depressed were the doctors here at the neurology forum(Thank God for this forum!) and my current doc. I found a doctor that did something that was truly against the norm. She called it,"Research"! WOW! What a novel idea! A pioneer, I say! Either way, She's not a doctor that pigeon-holes her patients. I've had most symptoms as you folks. Joan mentions that her legs are pretty well fried. As if she had been mountain climbing. Mine have been the same way. I'm assuming that it's caused either by an excess of lactic acid or the inability to remove the lactic acid quick enough. One thing that really helped is vitamin E. I take high doses, 1000iu 3 times a day, with meals. It's really helped. I tried a lower dose of 400iu 3 times and it didn't do much. Another thing that I really have to say that helped is exercise. I know how that sounds a bit rough right now, but it really helped. I am a triathlete and a former marathoner, so being tired all of the time(amongst other things) was litterally killing me. So, last year I started running again. I adopted the idea of no matter what, I would run. First it was 3 times a week then eventually I got back to training(running, biking and swimming) 6 days a week for about 16 hours. It has been up and down while recovering, but I can see my gradual improvments when I look back say... 2 months of 6 months ago. Like I said, it's been 2 and a half years and at my recovery rate, I suspect that I'm about half way through. Probably 4 to 5 years total. The information that I have found says that this nonsense can last anywhere from a day or two, up to several years. My suggestion is good nutrition, sleep and exercise. Oh, when the neurologist says that it isn't MS, I would believe him/her. They generally know it when they see it. Stress and worry doesn't help. It only exacerbates the symptoms. If anyone has any questions, I'd be more than happy to help. Just ask. We can do the email thing or set up a quick chat room.

Good luck to you all. Better days are soon to come.
Happy Thanksgiving.(for the U.S. people)
Gary

by Rae, Nov 23, 2000 12:00AM

I am sorry to hear that all you people have such problems.
Did you know that Lyme Disease only starts with a rash in 40% of it's victims, but that the second symptom is a flu like symptom that doctors mistake for mono or strep or many other things and then it goes into a zillion other symptoms that come and stay for a few weeks before changing to other symptoms?

The tests for Lyme are less than 50% accurate. It is diagnosed by the symptoms and most doctors don't have a handle on what the symptoms are. Sounds like a lot of you might benifit from some reading at http://www.lymealliance.org/ or http://***************/
The disease exists in 49 states and there is a lot more cases out there than you want to know about.

I mention this because even with the rash, my son was referred to 19 different doctors in a 7 month period and no one could come up with an answer. I spent a lot of time here looking for an answer until someone like me posted about Lyme. It has taken 2 years to recover, but it is possible.

by Joan M., Nov 23, 2000 12:00AM

Gary-hurrah for you! And your doctor! You know, after a year, I'm at the point where I wonder if deconditioning is making things worse for me and I plan to attempt to resume the yoga practice that I was doing before I got sick. Don't know if the old joints will take it, but I'm going to give it a try. Hang in there!

Rae-I have talked to all these docs about Lyme disease, and the rheumy I saw was one that I got from the Lymenet list, but he didn't think that was the problem. I still wonder. The tests I had were all done while I was on antibiotics for other problems, and I've heard that that might cause a false negative. Interestingly enough, I've had dramatic reactions to antibiotics since I've been ill that sound a lot like Herx reactions. My doc just says I've suddenly become allergic to drugs I've never had any problem with before. I'm a gardener and certainly could well have had a tick bite. It's just excedingly difficult to get that diagnosis when you don't have classic symptoms. Glad your son got some help!

by Reenie, Nov 23, 2000 12:00AM

Hi All.  I read these posts with heavy heart...what you all have been through! I have been there done that also.  I began having problems in 95, an initial episode of overall feeling sick, spleen, liver and gland pains, sore throat, and tickly crawly sensations on my skin.  I continued to feel low-grade ill all 95.  In 96 I suffered what was called an "acute cortical insult" -- some type of stroke like incident which left me with visual disturbances.  At that same time I began to have muscle twitching, cramping, burning, aching, etc.  I also had mouth sores which could not be conclusively diagnosed.  I have been to around 40 different doctors searching for an answer.  I have had many tests including MRI, SPECT scan, and EMGs (always normal).  In April I found out I elevated levels of porphyrins in my urine and stool.  However, the hepatologist did not suspect porphyria.  She did say that infections can elevate porphyrins - namely Hep C, Lead, EBV, and Lyme.  She ruled out Hep C and Lead.  That left us with EBV and Lyme.  At this point I made my way to a Lyme Literate MD. (LLMD) This is very controversial as you all might know - Lyme.  There are two camps - one says treat with antibiotics for 3-4 weeks and you are done.  Others say treat until symptoms are gone which can take up to 2 years.  I had been tested 2-3 times conventionally.  The LLMD had me do the Lyme Urine Antigen Test (LUAT) which came back positive.  I have been on antibiotics since May and have experienced some profound improvements.  I'd like to outline what my symptoms were - and what they are now.  10 = when they were at their worst, 0 = gone.

Fatigue = 1/2
Mouth Sores = 3
Visual Problems (dryness, floaters, light sensitivity, auras, etc.) = 5
Neuromuscular Problems (twitching, cramping, parasthesias, etc.)
= 2  (Still have mild diffuse twitching, but much better)
Headaches = 3
Sleep Disturbance = 0
Trigeminal Neuralgia = 0

Before I got treated for possible Lyme, I had made some improvements VERY VERY slowly over the course of time.  But I felt like a tortoise heading for the finish line.  Things I think helped:  Liquid Vitamin B, Magnesium supplementation, lots and lots of sleep, keeping stress at a minimum, acupuncture (esp. worked on the trigeminal neuralgia).  I am now trying an herbal Lyme protocol along with conventional antibiotics (look at www.dr-zhang.com or www.jnutra.com) and Moducare (plant steroids) for immunomodulation. I have tried many many drugs but for me effexor has been a godsend. I am still on it.

Tia - it's nothing short of criminal, in my opinion, you've been told it's "psychological."  Find a different doctor!  I went to some who tried to call it that too and then found others who were willing to acknowledge that no way could a person evoke such symptoms through depression or anxiety.  I have had depression and anxiety AS A RESULT of being sick and not being able to get answers not the other way around!!!  Lori, please let us know what happens at Johns Hopkins.  There is very little research going on regarding post-viral.  I wonder if anyone will ever do anything to help us.

As for my eyes, Chris, one neuro-opthamologist felt it was a brain problem, not in the eyes themselves (for example, they can see optic neuritis on exam).  My exams were always normal yet the light show I live with!  That would be great if my eyes could one day go back to normal, but I have learned to live with the disturbances.

For the women, my symptoms worsen and always have around the menses.

I do believe this is a cousin to GBS.  I don't think it's fair we are supposed to be content simply with knowing it's not ALS, MS, etc.  There were times I wasn't sure I even wanted to live - and here I was a mother of three young children 1, 4, and 7.  Without the love of my family I would not have made it where I am.  I would say go for the LUAT you have nothing to lose.  I will never know for sure if it was/is Lyme, but I do believe I had Lyme AND Epstein Barr Virus.  At the time I got sick I had almost no immune system - I hadn't slept through the night or anywhere close for up to a year, I was breastfeeding my daughter full time, getting no naps, dealing with 2 rambuctious boys the next day, no grandma nearby, etc.

Take good care of yourselves, sorry this post was so long, Maureen or ***@****

by Reenie, Nov 23, 2000 12:00AM

Hi All.  I read these posts with heavy heart...what you all have been through! I have been there done that also.  I began having problems in 95, an initial episode of overall feeling sick, spleen, liver and gland pains, sore throat, and tickly crawly sensations on my skin.  I continued to feel low-grade ill all 95.  In 96 I suffered what was called an "acute cortical insult" -- some type of stroke like incident which left me with visual disturbances.  At that same time I began to have muscle twitching, cramping, burning, aching, etc.  I also had mouth sores which could not be conclusively diagnosed.  I have been to around 40 different doctors searching for an answer.  I have had many tests including MRI, SPECT scan, and EMGs (always normal).  In April I found out I elevated levels of porphyrins in my urine and stool.  However, the hepatologist did not suspect porphyria.  She did say that infections can elevate porphyrins - namely Hep C, Lead, EBV, and Lyme.  She ruled out Hep C and Lead.  That left us with EBV and Lyme.  At this point I made my way to a Lyme Literate MD. (LLMD) This is very controversial as you all might know - Lyme.  There are two camps - one says treat with antibiotics for 3-4 weeks and you are done.  Others say treat until symptoms are gone which can take up to 2 years.  I had been tested 2-3 times conventionally.  The LLMD had me do the Lyme Urine Antigen Test (LUAT) which came back positive.  I have been on antibiotics since May and have experienced some profound improvements.  I'd like to outline what my symptoms were - and what they are now.  10 = when they were at their worst, 0 = gone.

Fatigue = 1/2
Mouth Sores = 3
Visual Problems (dryness, floaters, light sensitivity, auras, etc.) = 5
Neuromuscular Problems (twitching, cramping, parasthesias, etc.)
= 2  (Still have mild diffuse twitching, but much better)
Headaches = 3
Sleep Disturbance = 0
Trigeminal Neuralgia = 0

Before I got treated for possible Lyme, I had made some improvements VERY VERY slowly over the course of time.  But I felt like a tortoise heading for the finish line.  Things I think helped:  Liquid Vitamin B, Magnesium supplementation, lots and lots of sleep, keeping stress at a minimum, acupuncture (esp. worked on the trigeminal neuralgia).  I am now trying an herbal Lyme protocol along with conventional antibiotics (look at www.dr-zhang.com or www.jnutra.com) and Moducare (plant steroids) for immunomodulation. I have tried many many drugs but for me effexor has been a godsend. I am still on it.

Tia - it's nothing short of criminal, in my opinion, you've been told it's "psychological."  Find a different doctor!  I went to some who tried to call it that too and then found others who were willing to acknowledge that no way could a person evoke such symptoms through depression or anxiety.  I have had depression and anxiety AS A RESULT of being sick and not being able to get answers not the other way around!!!  Lori, please let us know what happens at Johns Hopkins.  There is very little research going on regarding post-viral.  I wonder if anyone will ever do anything to help us.

As for my eyes, Chris, one neuro-opthamologist felt it was a brain problem, not in the eyes themselves (for example, they can see optic neuritis on exam).  My exams were always normal yet the light show I live with!  That would be great if my eyes could one day go back to normal, but I have learned to live with the disturbances.

For the women, my symptoms worsen and always have around the menses.

I do believe this is a cousin to GBS.  I don't think it's fair we are supposed to be content simply with knowing it's not ALS, MS, etc.  There were times I wasn't sure I even wanted to live - and here I was a mother of three young children 1, 4, and 7.  Without the love of my family I would not have made it where I am.  I would say go for the LUAT you have nothing to lose.  I will never know for sure if it was/is Lyme, but I do believe I had Lyme AND Epstein Barr Virus.  At the time I got sick I had almost no immune system - I hadn't slept through the night or anywhere close for up to a year, I was breastfeeding my daughter full time, getting no naps, dealing with 2 rambuctious boys the next day, no grandma nearby, etc.

Take good care of yourselves, sorry this post was so long, Maureen or ***@****

by jennifer, Nov 23, 2000 12:00AM

this sounds like me. had a very bad case of pneumonia in may. took doctor over a month to cure. since them i have tmj, headaches, joint pain and now more recently tingling and numbness in arms and legs. feet cramp when walking and i have twitches and numbness on right side of face. every joint hurts, knees, hips, shoulders, etc. uncoordinated and have some loss of balance. extremely tired. gp diagnosed as fibromyalgia because of anxiety and depression but i don't know. went to neurologist, had mri, all normal. worried it could be ms but no lesions. where do i go from here. i'm just about ready to go see chiropracter. husband thinks it could be neck since i'm on computer all day and my posture is so bad. would appreciate any comments. no fever just severe muscle and joint pain plus all those other symptoms.

by chris, Nov 23, 2000 12:00AM

WOW! What a hot topic.. My GP doesn't believe in Post-Viral Syndrome's .. I think he is full of **** too.. if you search the web you find many people with the same ailments. When doctors dont know what is wrong they say anxiety/depression, if they just could admit they dont know.. well.. that would hurt their egos.

by From To All Suffering, Nov 23, 2000 12:00AM

Post Viral is real.  Don't let anyone tell you differently.  The flu virus is a chameleon.  It mutates from generation to generation.  Because of this factor, each case of Post Viral is different.  No two people share the exact same symptoms.  Symptoms vary in intensity.  Symptoms come, then go... only to be replaced by others in another category of symptoms.  The deciding factor that is universal concerning this problem is that one of the many Flu Viruses CAUSE this illness.

Many GP's don't believe in Post Viral Illness because they are general practitioners.  It is not up their alley.  Their education is "general", thereby falling short of being something "specific".  They label it "anxiety" for good reason.  The word anxiety means fear... and yes we do have fear.  It is fear of the unknown.

Joan from Maine?  Get on the phone and call for your test results!  You need an answer to that test because elevated protein levels in your spinal fluid is indicative of Guillain Barre Syndrome.  Please call and don't hang up until you have an answer.

I understand all that you are going through.  I had GBS.  I believe in Post Viral.  I know its reality... and I truly feel for you people.  Good luck in the future... and realize that your lives have been changed forever.

Thanks for listening.

by TO: To All Suffering - Above, Nov 24, 2000 12:00AM

I couldn't agree more. It took me 18 months to overcome what was initially diagnosed as the nebulous "post-viral" syndrome. After numerous tests and a multitude of medical specialists, I was ultimately diagnosed with Guillain-Barre Syndrome. I can't tell you how sick I was and how scared I felt. And the doctors (for the most part) either tried to tell me I had MS or it was all in my head. So to the poster above, I too believe in post-viral and even moreso in GBS. Even now, though considered fully recovered, my legs and feet continue to tingle, particularly when I'm tired. If this is the only residual from that horrible experience, I consider myself very lucky. To all those suffering, you will get better in time. Be patient.

by Mr.B, Nov 24, 2000 12:00AM

Hi all .. I have been suffering for 6 months with this post-viral illness.. I dont think i ever will get better.. I'm pretty sure this is going to kill me sooner or later, at least that is how it feels to me.

by Joan M., Nov 24, 2000 12:00AM

Yes, I plan to call Monday about the spinal tap results. I've just gotten so fed up with doctors who don't bother to follow up that I've put it off. I don't know why the neurologist I saw at the beginning of this didn't do a tap. He suspected GBS, although my leg reflexes were very brisk. My PCP says that was ruled out by the MRI I had later, though.

If I may ask, how were you diagnosed with this? The good doc here in this forum answered my question about post-viral a few months back and suggested that it might also be the chronic form of GBS, CIDP. I asked my doc about that and he gave me a brisk-that would have been ruled out by the MRI. I suspect that he didn't know what I was talking about though!

Glad to hear that you're recovering-what a nasty illness that is!

by gbg, Nov 24, 2000 12:00AM

I have had twitching in my muscles all over for about 7 months. I also have burning sensatons all over even sometimes in my lips. My fingers move involuntarily sometimes but it is not something that others would notice. My feet also feel like they are freezing and burning sometimes. I have also had facial fasiculations. Another thing that most of you have not mentioned is that I have a rocking feeling of my body. I also have irregular heartbeats. Somebody please tell me what is wrong with me!

by Doug Theobald, Nov 24, 2000 12:00AM

for Joan in Maine:

A clean MRI of brain and spine is what you expect with GBS or CIDP, because both affect mainly the peripheral nervous system, not the CNS. Also, GBS patients have *either* no reflexes or hyper-reflexes. GBS is acute and comes on suddenly, usu. peaking in intensity after 3 to 4 weeks. CIDP is called "sub-acute," since it takes at least 8 weeks to completely manifest itself. If your symptoms came on slowly, and if more were adding after 4 weeks, it might very well be CIDP. Most all of my symptoms developed within 24 hours (a few showed up after a week or two). Hope this helps,

Doug Theobald
***@****

by for Joan from GBS Poster Above, Nov 24, 2000 12:00AM

Joan:

I have to agree with Doug. I had a clean brain and c-spine MRI (except for already known herniated cervical disks). But I had hyper-reflexes. My symptoms came on mildly at first, but within one week were widespread. It started in my left leg (odd nerve sensations), then within a week, had moved to my right leg and ascended my body (all the way up to my head including my scalp!).
As I said, I was diagnosed initially with post-viral syndrome, but ultimately GBS (GBS really is, in fact, the body's misguided reaction to a virus). I never had a spinal tap since one neurologist diagnosed GBS based on symptoms alone. A spinal tap, as I understand, is the only definitive test for GBS. Other tests are nerve conductions and EMGs, but the tap is the where it's at.

Good luck

by Joan M., Nov 24, 2000 12:00AM

Thanks Doug and GBS poster. I had my suspicions about this because I did a lot of reading about it when the doc mentioned that he thought it might be that, and never once saw MRIs brought up. It was always CSF.
I'm not sure about how this came on. I was having pains and weakness in my thighs about 2 months before I became acutely ill.And after that, new stuff kept popping up, almost from day to day.
Well, I will find out about this tap on Monday, and go from there. Right now, I'm pretty angry about being lied to by these idiots.
Thanks for this information. I really appreciate it.

by Lady Jay, Nov 25, 2000 12:00AM

Joan,

Your PCP is a true idiot in the true sense of the word... and is a liar on top of that.  It is done because of his "generality" and "non-specificism".  There is NO virus on the face of the earth that can or ever will be detected by magnetic resonance imaging.  How can an x-ray in any way, shape or form "see" a virus???  It can't.  The Guillain Barre Syndrome can only be "discovered" in spinal fluid.  Documented.  Period.
__________________________________________________

Twenty-nine years ago, GBS almost killed me.  I was paralyzed from head to toe, laid-up in the hospital over 2 months and had to learn how to walk all over again.  Back then in '72', GBS was a rarity indeed.  It took a top notch neurosurgeon to identify it.  He observed me, then said based on symptoms alone, "GBS... but I need to do a lumbar puncture to clarify."  The GBS did not appear as the aftermath of the flu.  I acquired it from a contaminated flu vaccine.

How many of you folks took a flu vaccine, then began your hideous trip?  How many just got the flu, then began this trip?  Nowadays, a lot of people get flu shots and it seems that GBS, Post-Viral and CIDP is more commonplace.  When my symptoms first began, I went from hyper-reflexes (Feb.4) to no-reflexes (Mar. 27).  Tingling to numbness to paralysis.  I couldn't even smile or blink my eyelids.  I went from burny eyes to light-sensitive eyes to double & triple vision.  I was in hell-on-earth.

Since then, I have seen many cases of GBS.  Some were so intense I had to go cry.  Others, so mild it was baffling.  But Post-Viral???  It's another player in the same ball game.  It's unpredictable.  Like GBS... never the same person-to-person, case-to-case.  Residual varies in the same manner.  It's always a carry-on of symptoms.  It doesn't matter.  Paralysis of some sort... or burning, tingling... hot & cold sensitivities, or sensitive eyes.

I could drone on and on about Guillain Barre and Post Viral Syndromes.  Some don't believe Post Viral exists.  Those who suffer from it shake their heads in disbelief because it does.  To the disbelievers I say, "Uh... you should see it from my side."

Again... thanks for listening.

by Joan M., Nov 25, 2000 12:00AM

Yes, all this began after last year's flu shot.
You know, I don't think that anyone thinks their doctor has to know everything. A general practitioner is just that. I don't expect him to be a neurologist. But, I do expect him to admit that he doesn't know the answer to a question, rather than just shining me on. As to this neurologist, who couldn't be bothered to do a spinal tap and find out one way or the other- I should have walked out of his office the first time I saw him. Before he even did an exam, he asked me if I was the kind of person that expresses anxiety in physical symptoms. That should have told me that he wasn't going to take me seriously. All you have to do is take a look at many of the posts in this forum and see that this attitude isn't unusual.

by Randy Kleister, Nov 25, 2000 12:00AM

My

by Scared.., Nov 25, 2000 12:00AM

I wonder if anyone has died from post-viral syndrome? I feel like that sometimes.. hopefully one day i will get better..

by lori, Nov 26, 2000 12:00AM

Thank you all for your postings. I never expected to get such a conversation going! My appointment at Johns Hopkins isn't until january but when I return I'll re-post and fill this group in on any insights. If I hadn't had the appt there, I was seriously considering Cleveland Clinc because of the Doctor repsonses on this topic. I believe having a good doctor is the most helpful thing in this case.
Hang in there everyone! Don't forget to eat well and get plenty of rest. The suggestion that was made about exercise is good too, even if you can only do a little. We have to help our bodies heal themselves since there doesn't seem to be any other course of treatment.
Lori

by jennifer, Nov 27, 2000 12:00AM

after reading the rest of the posts, i got to thinking. i had my flu shot approximately 3 weeks before all this started. i have another appointment with neurologist but am doubtful since he told me it was stress. now having severe, and i mean severe joint pain, electrical shock sensations in arms and legs, severe neck and shoulder pain, hip pain, cramps in feet and toes when walking, difficulty swallowing and i can go on and on. i can't even lay in bed that my hips, knees and ankles just kill me. i swear if he treats me like a moran again i'm going to scream. unfortunately he's the only neuro around my area that takes my insurance. the mri came out normal but let's see where we go from here.

by From: To All Suffering, Nov 27, 2000 12:00AM

Jennifer,

I'll wager that you have never mentioned the flu shot to the Neurologist.  He/she may look at you in a funny-sort-of-way, then tell you, "Ah... that would have nothing to do with all this **** you're going through presently."  Don't let the doc let it lay.  Mention that you have read all about this while doing research on "Why the hell you feel so bad??!!" because you want some answers.  Ask the doc why is it that before the flu vaccine you felt like a million bucks... then after you rolled up your sleeve, this is what is going on?  Study up on Guillain Barre Syndrome and CIDP, then ask the doc to describe what he knows.  Don't leave that office without hearing what "he" has to say.

So what if he's the only doc who takes your insurance?  What's that got to do with how well he does his job?  You DONT work for him... uh rather, HE works for you.  You hire this doc to do a job for you.  Docs are detectives.  If he doesn't do the job you hired him to do, then fire him.  You are the boss.  You hold his paycheck in your hand.

Everyone... please remember that.

(Sorry for going off like this, but I am one who isn't afraid of the profession just because of the stiff white coat. - Make them work for you.  The flu shot is his first clue.)

Thanks again.  And... I wish you all weren't suffering so.  I know how you feel.  You all are in my prayers.

by Lee, Nov 28, 2000 12:00AM

I have the same symptoms as so many of you and most of it started soon after a flu shot. My first flu shot ever! I don't know if it is just a coincidence but I'm never getting a flu shot again!

by Lee, Nov 28, 2000 12:00AM

I have the same symptoms as so many of you and most of it started soon after a flu shot. My first flu shot ever! I don't know if it is just a coincidence but I'm never getting a flu shot again!

by chris, Nov 29, 2000 12:00AM

Lee - How long have you had your symptoms? Have they gotten any better for you?

Chris

by dory, Nov 29, 2000 12:00AM

Chris- I have had these symptoms for over a year now. They gradually got worse until probably July of this year and now they seem to come and go monthly. In between these things I still don't feel great but will take it compared to what I was feeling.

by Chris - TO LEE, Nov 30, 2000 12:00AM

Lee,

Have you had any visual problems? If so, what kind?

Thank you,
Chris

by Lady Jay, Nov 30, 2000 12:00AM

I can answer that question about visual problems. Yes... yes... yes. My eyes became extremely sensitive to light... the worst was flourescent lightling. I actually had to wear sunglasses inside at my job. My boss and co-workers thought I was into drugs. So, the anwser is YES. In a severe case of GBS, the patient can actually see double and watch it slowly decrease as the condition "recedes". I have delt with many cases of GBS and Post Viral and EVERYONE complains about light-sensitive eyes. You're not imagining it. It's real.

I'm glad I brought up the flu shot. It seems to be the route of all this evil and it has now been documented right here on this Forum. I'd make a copy and take it to your "Doubting Thomas" physician. Take care all. There's light at the end of the tunnel. Problem is... it's a long tunnel.

by Chris - TO LEE, Nov 30, 2000 12:00AM

Did you happen to have a sudden increased floaters , sparkles and ghost images on high contrast images?

Thanks
Chris

by Jonathan's mom, Nov 30, 2000 12:00AM

This is really fascinating. My son's endocrinologist mentioned the possibility of a rare form of GBS that doesn't paralyze the limbs and lungs and I have come across a few people now who have been diagnosed with it. However, our doc didn't mention performing an LP to check the spinal fluid, at least not yet. In the meantime, he continues to wax and wane. A touch of his information is posted above under the GBS thread. His work-up has been exhaustive, even invasive. His symptoms first began with the very acute onset of Epstein-Barr, three months following the last of his hepatitis B series (required by our schools). Postviral syndromes have been discussed by numerous specialists (he has seen over 12 specialists now). He had never been a sick kid, always a very healthy, strong and wonderfully well built, talented athlete. He has been diagnosed with autonomic dysfunction and autonomic neuropathy (initially uncontrolled hypertension and tachycardia even with meds, which then changed to hypotension and bradycardia; he currently has an autonomic diagnosis of orthostatic intolerance, excessive orthostatic tachycardia, excessivesupine bradycardia, hypotension and postural orthostatic tachycardia syndrome. However, there are other problems that come and go, severely, and very strange and always changing, but always abnormal, test results. Any insight is welcome. Information on him is also in the Archives under something like "Formerly Healthy athletic teenager...." under Autonomic or Dysautonomia.

Thanks and good luck to all. This is a horrible illness, whatever the heck it is. It has surely ruined his life and we've been at this for two years now (he is 16).

by To All Suffering - to Chris, Dec 01, 2000 12:00AM

Chris,
I had numerous floaters.  In fact, the vision problem began with floaters.  They were numerous, but only so many.  They were nowhere near as bad as the next problem.  Light sensitivity.  It appeared, and kept getting worse on a day-by-day basis.  It peaked with the sparkles that you describe.  If that wasn't bad enough... every single thing I looked at had a ghost-like "halo".  While all this was happening, my body felt like it was having the flu, but with no temperature.  None.  Zilch.  I couldn't figure out why in the hell I felt like death, but had no fever!  I continued to work (struggled is a better term) then began my quest to find out what was wrong.  Nobody knew.  I had 4 different diagnosis's over a 2 week period.  Then my tongue went numb on the side and the "halos" started, then my toes went numb, then my fingertips and the whole time... it felt like a bad bad case of the viral flu (one diagnosis was just that).  The whole time my eyes... jeeze!  My eyes kept getting worse and worse.  Finally, I went to my GP again (by now, deperate and drooling because of the numbness) and he admitted that he couldn't diagnose it in his office.  Then I collapsed, somehow ended up in an ER seeing two identical neurosurgeons beside my gurnie bcause my vision had gone totally double that quick.  Within a week, I was totally paralyzed from head to toe, seeing double with light-sensitive eyes and in hell on earth

And all this... from a bad flu shot.  Mandatory by the company I worked for.  By the time GBS allowed me to be released from the hospital, it was over 60 days later and still not able to walk.  My vision was somewhat better, but the rest of me... (ha) weighed 96 lbs- down from 126.

It's all Post Viral... Guillain/Barre, CIDP and Post Viral.  All syndromes stemming from... what else?  Either the flu itself... or a flu shot.

And the aftermath... well, that's another story.  Every single one of us has a different story to tell.  Now you know how you acquired your problem.  It does get better, however.  It took me over 3 years to feel like somebody again.  (I didn't mean to elaborate so broadly, when all you wanted to know dealt with vision-related problems.)  Good luck

by Reenie, Dec 01, 2000 12:00AM

Can't believe what you have been through with your son. Five years later I am much better. I suffered with many of his same symptoms. It is/was either post-viral and/or Lyme Disease. E-mail me off this forum if you need support. Maureen ***@****

by Reenie, Dec 01, 2000 12:00AM

I want to say that it is never MANDATORY that you vaccinate your child as you all might think. Almost all states allow religious or philosophical exemptions. I took a religious exemption for my 5th Grader and did not vaccinate him against Hep C. I am not completely against vaccines, but I am against this practice of "vaccinitis." The medical community has NO IDEA exactly this might be impacting the immune systems etc. of our children over the long-term. Playing super heros, they want to eradicate every disease from the face of the planet...this is a game we will not win at -- viruses and bacteria mutate and find a way to infect. Two of my children had the chicken pox last Winter and while no tea party, they survived just fine with rest, good nutrition, and homeopathy. Now they have real immunity. Of course this rationale cannot be applied to something like tetanus -- each vaccine must be looked at in terms of its risk/benefit ratio. There are many groups out there that will help you figure out the laws in your state. Just explore it over the net. Good luck.

by Lady Jay, Dec 01, 2000 12:00AM

I agree.  Vaccines aren't mandatory, but there are some that should stand.  Small Pox, Polio...

But as for having vaccines for EVERYTHING under the sun... NO NO NO.  The Flu Vaccines?  Uh... (shaking my head) no.  If they could guarantee no contamination and 100% safe for everybody and if the entire population of the world was facing Black Death, I'd probably change my mind...

...but I got slammed up and down, back and forth, sideways and upside down.  Documented.  To me?  Ha!  Good luck in trying to convince me.  There's enough anti-bacterial products gorging the marketplace now to prevent "grey death".  There should be no need for 1000 vaccines for 1000 different viruses.

They say, "The Flu can kill you!"  I say, "No it can't... it's what the virus mutates into that can kill you!  Namely the Guillain/Barre Syndrome (if not caught in time) be it acquired via personal contact or... a stinking vaccine.

I haven't had one since February 4, 1972... and haven't had any flu since.  (think I could be immune?)

by Doug Theobald, Dec 07, 2000 12:00AM

This is a message to everyone involved on the "post-viral" threads of late - if you would be willing to give me your e-mail address and talk about things, I am interested (Lori, Joan, Amy, Tia, Maggie, Gary, Rae, Jennifer, Mr.B, Lee, and anyone else). I personally have benefitted greatly from hearing everyone's stories, and learning that I am not alone in all this. I would really like to know how everyone is doing, now and in the future.

Thanks and good luck,

Douglas Theobald
***@****

by Toni, Dec 10, 2000 12:00AM

I've been following these posts and have sat silently, but I have to say...after reading the posts about vaccines...even the polio vaccine if not infallible. I had polio at the age of 12 after having all the polio shots. The doctors think I may have contracted the virus from the shot itself. Since then, I don't get flu shots. I figure if I'm going to get the flu, I'll get it. My heart aches as I read what you all have been going through. I have my own story which I'll share with you in another post.

by Beth, Dec 21, 2000 12:00AM

I too had a flu shot about three weeks before I felt like I had the flu...my legs felt like someone was pulling on them....then I got the rash that started in the inside of my elbow and spread to my neck upper arm and chest...it itched....was treated for tinea, scabies, ringworm, excema..nothing worked...then my ankle start to hurt....then my knee...now my lower back and down my leg...always on the left side....had all of the tests..all negative...now on Celebrix...it still hurts/pain....and it goes on...but I am glad to see that I am not crazy....

by dawn campbell campied1@aol.com, Feb 17, 2001 12:00AM

wow, i'm so blown away by what i've just read. i also am thankful after hearing some of the intense cases of post viral, gbs, lymes whatever.  i'm a rn healthy athletic 37y.o.  i received my flu shot end of november and began with nausea and fatigue end of dec. i had what seemed like a gi flu but i began having tingling sensations t/o my legs and forearms that turned to a crawling skin sensation.  i had nausea and no appetite and began losing weight.  on the night that i had my acute flu symptoms  i was (sorry to be graphic) vomiting, having diarrhea, sweating profusely, and i couldn't sit up.  i fainted and couldn't get off the floor.  i had the most amazing buzzing feeling t/o my body.  i felt i could hear the buzz and well as feel it. i truly thought i was dying.

that was 7 weeks ago.  i am much better but continue to have stomach dysfunction, i'm on meds for my low blood pressure.  i have a couple good days(feel strong "normal" then i have a couple bad days i.e. fatigue, tremors, feel cold to the bone, no appetite, h/a, dizziness, occas feet go numb.

my neurologist said stress, anxiety.  i am here for you all i feel your pain  i feel your discouragement.  i was sure i was going crazy because it does sound crazy and as you all wrote every damn test came back negative.  i got to a point where i longed for a positive test.  i cried when my ebv test came back negative because i needed something to grasp. maybe more like i needed something to tell people so they could, i don't know, believe me easier, not look at me or tell me how stessed i'd been and how i over do it.

well i've gone on long enough.  my e-mail is ***@****  i feel like i just discovered long lost family.  thanks  dawn

by melanie, Feb 18, 2001 12:00AM

After being assured I did not have to be in perfect health for a flu shot,I had a flu shot Dec.18 at the end of a severe two week head cold. Within 5 hours I had pains radiating in my left (shot) arm and within a week severe pains in both my left arm & chest. All of this was diagnosed 12/26 as inflammed chest cartilege from probably a viral infection. During the next week symptoms intensified with sweating hands& feet, left breast pain, tremors, heart attack similar chest pain, & chest pressure. After two trips to the emergency room I was sent to a cardiologist(Grant Hospital) who ruled out heart problems. My doctor then started treating my problems (anxiety/panic) attacks as neuro-chemical imbalance problems although I did go to a couselor who ruled out psychological releasing me after two visits. Currently I am taking 5mg. of Valium 3 times per day and 20 Mg. of Celexa hoping within a month to be off the Valium. I am a 50 year old female (hormone & thyroid tests OK)H.S.teacher who is not used to being sick (I missed 20 work days in Jan!) and I want my life back. Any similar stories or advice?

by fionasuki, May 24, 2008 07:18AM

A related discussion, post viral was started.

by caldy, Jun 09, 2008 09:32AM

A related discussion, heart was started.

by Allison191, Nov 16, 2009 07:51AM

A related discussion, post viral sydrome was started.

by Allison191, Nov 16, 2009 07:51AM

A related discussion, post viral sydrome/lymes disease was started.



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