I have some more questions about this post-viral thing, and I apologize in advance for the length. I am a thirty year old male who used to be in exceptional health, very active, running ~15 miles a week, hiking, weight lifting, and rock-climbing. Never had a neurological problem before, ever. On Sept. 16 of this year I began to feel like I was coming down with a cold/flu. Thus began three weeks of one of the strangest infections I
Sorry that your having problems. Let me address the MS issue first. MS is a disease with relapsing and remitting signs of weakness and/or numbness and/or loss of vision. There are rare forms of progressive MS but if you had one of these it would be an easy pickup as they are so bad. You are currently only 3 months into the symptoms and you have had a relapse suggesting that if this was MS your clinical exam should match the laboratory data. Since your MRI is normal and the phyisical exam is normal (close), MS does not fit. Although you might have spinal cord MS, there should have been a distinct spinal level of symptoms.
The fact that you have fasciculations can fit with a post-viral induced benign fasiculation syndrome. If you indeed had a true polyneuropathy, then the EMG should be able to pick up the abnormality as you would have large and medium fiber findings. If you in doubt then I would recommend getting an EMG.
The literature on post-viral syndromes comes mostly in the infectious diseae literature. The neurology literature is sparse but exists. Mostly in the form of the polyneuropathies.
Thank you for your questions Doug. You are quite right on the comment that there are many others with these same issues/symptoms that are watching this forum.
I have been watching this forum for 4 months now, with the duration of my problems lasting over 9 months so far.
I would love to find more information on this post-viral syndrome as well.
Please, if you find anything out, post it in here, it being another site, book, or anything. I'm still in pain and still seeking answers.
Thank you, thank you Drs., Doug and all. I am one of the post viral "posters" on this forum. I have been helped so much to know I am not alone in looking for answers AND knowing this is not in my head as several physicians have hinted. I am on my way to see a movement disorders specialist in Maryland next Wednesday. I'll post any insights when I return. The lead to checl out more in the infectious disease area is very helpful. Thank you all.
My fifteen year old daughter had different symptoms but we are considering the potential that it may fall into the "post viral syndrome" category. She was originally diagnosed with "mono" in the middle of October with symptoms of a very tired and overall sick feeling. She also had a pain in her left side which has continued to become more severe over the last two months. Her blood work was apparently misread and she was found not to have mono. The next diagnosis was potentially Hodgkins but abdominal cat scan and the MRI have both indicated that she does not have this. All blood work continues to be normal. The sick and tired feeling has continued and she is now taking tylenol with codeine for the pain which takes it away for about 6 hours. Drs. seem to think pain is in her head but this is crazy because it is a true pain that is relieved with painkillers. Her lymph nodes have decreased in size so Drs. are saying this is a bizarre virus that will run its course and no explaination for the pain. I am wondering if anyone has informaton on post viral syndrome or post viral polyneuropathy causing nerve damage and specifically in the abdomen. Pain is like she is being stabbed with knives so it seems consistent with nerve damage from the virus. I was told by a physician that this is possible but my own pediatrician says he had never heard of such a thing.
If anyone comes across any literature or websites related to nerve damage from viruses please let me know. I am also going to search infectiuos disease and will provide info to this site. Thanks.
Everything posted here sounds like typical symptoms of neuro-Lyme to me. Unfortunately, Lyme testing is extermely inaccurate and has a 50% failure rate, so a negative test is meaningless. You should go to a Lyme specialist and get checked out thoroughly before it is dismissed as a "virus."
I find it strange that they changed an original diagnosis. Your daughter sounds like a classic case of Chronic Fatigue Syndrome (overall yucky, not-wanting-to-do-anything, unexplained creepy pain that feels like it moves here-and-there-and-everywhere). Do some research on the Epstein/Barr Virus, then compare the symptoms. Research Mononucleosis. Touch on Guillain/Barre and CIPD for more enlightenment if you want. The "Post Viral" arena isn't an imaginary place. It exists in our physiological world the same as every single, solitary virus that spreads and mutates. A physician who shrugs post viral off as "being all in the mind" is a scientific "detective" in "denial". (Wouldn't it be absurd to say that the Polio virus had no "post viral" symptoms???)
This is in response to Doug. You won't believe, how much relief I found when I read your post. I am a 32 y/o oncology RN and began having strange symptoms on 11/11. It began with a prodromal syndrome of profound fatigue and weight loss. It culminated in my admission to the ER w/ L sided focal deficits, hemiparesis, myoclonus, increased DTR's w/ clonus, nuchal rigidity, neuralgic like "burning" sensation bilaterally in my occipital lobe region, photophobia, autonamic disregulation that you wouldn't believe. I was tachycardic at 138 for 20 minutes at a time, would break out in sweats in the middle of the night, and ran a low grade temp. 99.8, the entire time. All the neuro checks were abnormal w/ more pronounced weakness on L side. The serology tests, however were normal. CSF, showed 1 WBC, (wnl), CT, MRI, EEG, 2D Echo unremarkable.
The ER physicicans began asking about any prior medical history. The only thing that I ever sought help with was for joint pain and fatigue which led me to a rheumatologist, who tested me for SLE or Sjogren's. I had a positive ANA,1:160, speckled pattern and positive SSB for Sjogren's. Consequently, the rheumatologist was called, he decided I had some CNS vasculitis and started me on high doses of IV Solumedrol 1 gm/250 cc's NS. I was in the hospital for 5 days. Upon discharge, I was sent home on a Medrol pack to taper me off the steroids.
However to this day, I still have cognitive dysfunction, agnosia, an ataxic gait, fasciculations, and residual pain/ pressure behind my left eye which tears on occasion.
I don't know what happened to me either. Nor do two neurologists who say "non-specific" vasculitis. The thing that bothers me the most is the cognitive dysfunction, and profound fatigue and fasiculations. I was happy and healthy prior to this incident, and feel like a victim of some yet to be discovered new super infection.
The progression to normal is very slow, and I've gained back some weight, which I couldn't afford to lose, in the first place, and show no s/s of muscle atrophy. MY neuro wants to do a spinal MRI to r/o myelopathy. (AKA last ditch effort, and my feeling he hasn't a clue of what is wrong w/ me.)
Anyway, I would like to hear of anyone who ever experienced this "syndrome" before. It isn't fun, and am wondering if it is a VIRUS, it's a funky one, and if it isn't...keep me in your prayers. Karen S, RN.
I am resonding to C.J. and Mike. Thanks for your feedback. What is neuro-Lyme? My daughter received the lyme disease vaccine mid July and the second dosage mid- August. We live in a wooded area on the east coast and it was recommended by our physicians. I have always been concerned that this could have caused this because the symptoms began exactly 6 weeks after the second vaccine dosage. Her blood works shows antibodies from Lyme but no lyme. I am going to call a lyme specialist on Monday.
The pain is a very severe pain - she is virtually unable to walk- concentrated on in the left side of her abdomen. The tylenol with codeine takes it away for several hours but it is horrible to have to continue this drug, she has been taking it for almost a week as the symptoms continue to get worse. The night time is the worst, the sick feeling is at the highest level. And her body gets very chilled,she says it comes from the inside and then a while later very sweaty and hot. Overall she continues to get sicker even though Drs. say she is getting better because lymph nodes are going down. No one seems to believe us.
I will continue to search for answers and also I am going to try to see a neurologist to see if pain is nerve damage - her description of the feeling of being stabbed by knives I think is consistent with nerves.
Any additional feedback would be very much appreciated.
Thanks everyone for your replies. Mike - where did you get your figure of 50% accuracy for the Lyme tests? I have heard a figure of 16% false negatives before (which is still rather disconcertingly high). I have been tested for Lyme by both the ELISA and Western Blot (both neg), and on Tuesday I get Lyme PCR testing of my CSF. My uncle is an infectious disease doc, an expert in Lyme disease, and he places a rather high confidence in the Western Blot (but not the ELISA - he has seen several patients neg w/ELISA and pos with WB). I am still considering Lyme seriously, because I still have suspicious symptoms like dull deep migrating tendon soreness in my arms, hips, and legs. If things don't keep clearing up for me, and if all the lumbar puncture tests are neg, I will consider a round of antibiotic treatment, just to see what happens. Sue - has your daughter been treated with antibiotics? If not, I really don't see why she shouldn't be, just as an empirical medical test to see if she responds favourably. My uncle, the Lyme MD, has suggested this to me and I've seen our local CCF Neuro RPS suggest the same to another Lyme negative yet Lyme suspicious patient. FYI, I am also experiencing stabbing pains in my left abdomen, which correlate in intensity and timing with my other tendon pains. They aren't as bad as your daughter's sound, though. I've had a lot of gastroenterological tests done lately which have shown nothing but an inflamed small intestine (mild acid over-production, which I attribute to autonomic nerve dysfunction).
This is a message to *everyone* involved with the "post-viral" threads of late - if you would be willing to give me your e-mail address and talk about things and /or share information, then I am interested (Lori, Sue, Karen, Mike, 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. I intend to inverstigate this post-viral stuff in depth (a few trips to the library are warranted), and anything I find I will send to you. If you would rather remain more anonymous, I will also be posting at the Harvard Neuromuscular forum at:
(make sure the whole thing gets pasted into the browser URL window). You can search for my profile name "theobal" or "post-viral." MDs rarely, if ever, join in at the Harvard forum, but posting and starting threads is extremely fast and easy.
The reason why doctors are reluctant to dole out antibiotics is simple. Antibiotics kill bacteria. They don't kill viruses. Bacteria lives and breeds. Viruses come and go quickly. So it's pointless.- C.J.
Douglas, thank you for your feedback. No, my daughter has not been treated with antibiotics, I have asked for them but with no results. So far we have seen 8 doctors and I think now that they have diagnosed a virus everyone seems to think she will just "get better" and the pain is all in her head. I am working on finding a neurologist today. We see at diagnostic specialist at our local Children's hospital and I am hoping he will recommend this, if not I am going to do this on my own. It is very difficult to reach the doctors and often takes several days to get a call back at this point. The whole situation has been very frustrating. My daughter has been out of school for 2 1/2 months. She just wants her life back.
My email is ***@****. I would be very interested in hearing from you and any research you find on post viral symdrome. I hope you get more information on your symptoms also and continue to improve. I understand everyone's frustrations and the lack of information available.
I do understand that antibiotics are only for bacteria but this is a "virus" that has lasted over 2 1/2 months and no one can seem to tell me what it is. She has been tested for numerous conditions. I don't believe in overmedicating at all but at this point I am willing to give anything a try just to see if it works. We were finally able to get an appointment with a pediatric neurologist at the end of the week. Original info was saying no appts. until March but they were able to fit us in. Thanks for the feedback
I agree. It sounds like thier diagnosis of a virus is just a working hypothesis at the moment. No virus has actually been isolated and/or no viral antibodies have been found, right? CJ is correct that *if* it is a virus, then antibiotics won't help. But if it's not, then they just might. And what do you have to lose at this point? Most parasitic infections don't increase WBC count (e.g. Lyme), which is what most docs look for to justify prescribing antibiotics.
Doug, thanks for the feedback. No virus has been isolated.White blood cells have not been elevated, we have had 5 rounds of blood work. They were originally going to remove a lymph nodes in the neck but since they decreased in size they decided to let the virus run its course. Of course I was grateful that they didn't do the surgery but we still have no answers. She has had sweats and chills all along but now we are registering a fever with the sweats. Yesterday it was 102, didn't last long and was back to normal within 1/2 hour. I have left a number of the messages for the specialist that we are seeing but he doesn't return my calls. I think he fells that now that he told me she has a virus we just have to wait it out. I have also called my own pediatrician but he says we have to deal with the specialist because he has all of the facts. This has been such a frustrating experience and I really don't have the medical knowledge to understand all of the symptoms. I feel like no one will take us seriously and it seems like that is the case with a lot of other people on these boards also. We are seeing a neurologist for the pain and hopefully this will shead some light on that. My daughter is an honors student and a good athlete and I just have to help her get her life back. At this point we are very discouraged. Thanks for listening. If you happen to see any info that may relate to our problem please let me know. I hope you are getting some answers for yourself.
CJ, thanks for all of your responses. I am seeing both the neurologist and the diagnostic specialist tomorrow at our local Children's hospital and this gives me one more question to add to my list. I figure the more info I can get the better and eventually this will lead to some conclusion. I will keep you posted. I will just never accept the "all in the head" answer. I am amazed how many others hear that too. I would rather hear an honest "we don't know, lets keep looking".
I had a particularly severe case of the Guillain/Barre Syndrome many years ago when I was just 18 years old. It paralyzed me from head to toe... and came from a flu vaccine. It was indeed a virus... and it had to "run its course". In other words, there was nothing... nothing on God's green earth that could be given to me to ease the suffering. My neurosurgeon told me that I was literally going to become a "wet rag" and bear with it all until the virus had "run its course". To better visualize the time span, here are the dates...
February 4- received the vaccine
February 5- began flu-like symptoms
February 12- began seeing family doctor
(it wasn't going away)
February 15- began feeling better
(short-lived only 3 days)
February 20- diagnosed with viral flu @ ER
(was told to take rest of week off) March 2- returned to ER diagnosed with mononeucleiosis
and iron-poor blood)
March 10- back to same ER...CAT scan for brain tumor
negative- told to see a shrink.
March 20- again... same ER was "handed" phone # of a
shrink and a neurologist- but wait! there's more!
my tongue numb on left side and left side of face
beginning to lose function. I will never forget what
was said to me. "If you'd just tell us when and how
hard you were hit, we could probably help you!"
By now, I am flipping out, slobbering from the corner of my mouth and teared-up constantly.
March 24- I can't take much more so I go to the family doc.
He doesn't know. Gives me antibiotics.
March 28- I collapse, never to walk again until late July.
A Lumbar puncture is done. Spinal fluid tells all.
Elevated protein- Guillain/Barre
I really didn't mean to get so involved here, but... Sue? Are all these doctors aware that your daughter received Lyme vaccines? If not, you need to tell them. If so... make them delve into the fact. Just knowing that has me thinking they are responsible for her entire dilemna. Please check into this... because it is like literally riding into battle all by yourself with no protection.
CJ, thanks so much for your feedback. I hope you are doing okay now, what a horrible experience. I tell everyone about the lyme vaccine, we have seen 4 pediatricians ( my daughter had still been going to her childhood Drs. because they specialize in adolescent medicine and she basically went for sports physicals.)
We have also seen 2 infectious disease specialists, a diagnostic specialist and and ENT ( due to enlarged lymph nodes ) at our local Children's Hospital. The diagnostic specialist specializes in lyme and just dismisses the lyme vaccine factor. It had been a major concern for me since she was misdiagnosed with mono and I keep bringing it up. The specialists originally thought it was Hodgkins because of lymph nodes increasing in size and the sweats and chills but MRI of the neck indicated no - and lymph nodes are decreasing. We are seeing a neurologist tomorrow for the pain in her side. I don't know what he will know about lyme disease. I do feel like I am on my own here with nobody taking us seriously. Our pediatrician told her to just go out and do things and you will feel better -he also recommened "counseling". I personally have no problems at all with counseling when needed but this is not the case. This is a well rounded popular teenager with a great attitude about life - even after all she has been through she continues to get all A's in her schoolwork and keep her spirits up.
There has to be an answer for us. I really do appreciate your feedback, it is very helpful. I will keep you posted on the neuro visit.
I, AM A REGISTERED NURSE, WHO HAS POSTED IN VARIOUS AREA OF THIS FORUM BEFORE UNDER FASICULATION TITLES. THE MORE I READ THIS FORUM, THE MORE AMAZED I AM THAT WE ALL HAVE SUCH SIMILAR, BUT UNDIAGNOSABLE SYMPTOMS. QUICKLY, I WILL TELL YOU THAT MINE PROBS STARTED AFTER A VERY SEVERE FLU WITH BODY ACHES AND THE MOST HORRRIBLE NOC SWEATS-DRENCHING MY CLOTHES 3 X A NOC. 1 MONTH LATER, ALSO AFTER A SEVERE FALL, AND BEING ON AN ANTIBITIC FOR A UTI, I DEVELOP TINGLING IN MY FINGER TIPS AND TOES OF ONE FOOT. I WOULD LITERALLY GET UP IN THE MIDDLE OF THE NOC AND PUT MY HANDS UNDER COLD WATER BECAUSE THEY FELT AS IF THEY WERE ON FIRE AND IT WOULD KEEP ME AWAKE. BEING A NURSE, I HAVE NEVER HEARD OF ANYONE WITH A STORY LIKE THIS UNTIL I GOT ON THE INTERNET AND REALIZE MANY OF US ARE NOT TRULY DIAGNOSED. ANYWAYS, SHORTYLY AFTER ALL MY MUSCLES ACHED SO TERRIBLY I FELT AS I COULD FALL AT ANY TIME, THE TINGLING AT A MINIMAL, BUT THEN STARTED THE HORRIBLE ALL OVER THE BODY FASICULATIONS-AND HERE I AM 7 MONTHS LATER, WITH ALL SYMPTOMS GONE EXCEPT FOR THE FASICULATIONS-ONLY RARELY CAN I SEE THEM IN MY FEET, BUT MOSTLY FEEL AS IF MY MUSCLES ARE JUMPING ON THEIR OWN. I HAVE HAD NEG HEAD MRI-SPINE MRI SHOWED BULGING DISK AT C6-C7, 3 NEG EMG'S, EVEN IN THE AREA OF THE VISIBLE FASICULATIONS-THANK GOD NOTHING ABNORMAL SHOWS UP-
I ALSO WILL MENTION I HAVE DEVELOPED HYPER REFLEXES WHICH MY DOC THINKS IS DUE TO THE BULGING DISC-MY STORY IS SO SIMILAR TO ALL OF THE ONES I HAVE READ ON THE FORUM-AND I AM CONVINCE THAT ONE OF THE ABOVE THINGS HAS CAUSED THIS. DO NOT EVER LET THEM TELL YOU THIS IS IN YOUR HEAD BECAUSE IT IS REAL FOR THOSE OF US THAT TWITCH LIKE CRAZY-THAT IS ENOUGH TO MAKE ANYONE ANXIOUS. SORRY THIS IS SO LONG, BUT I JUST WANTED TO GET MY STORY ACROSS FOR ALL OF YOU WHO CAN RELATE--HOPEFULLY SOME DAY SOMEONE WILL HAVE A TRUE DIAGNOSIS FOR ALL OF THIS SO THAT OUR MINDS CAN BE PUT TO REST-EVEN WITH MY MEDICAL BACKROUND, I AM AT A LOSS AS TO WHAT COULD BE AFFECTING ALL OF US-HANG IN THERE!!!LISA,RN,BSN
Lisa- May I ask: Did you get the flu in normal fashion or did you take a flu shot? I ask that question of everyone and most took a flu shot.
I can't understand why the doctors think this problem is "all in you mind". They are the ones who don't understand this illness obtained from flu shots and the flu itself because its a "virus". Viruses "come" and "go". Some leave another problem in their wake... and it doesn't have a name. Mine had a name.
I think the Guillian/Barre Syndrome can be weak... or bitter strong. It numbs and paralyzes some... and causes major weakness, tingling, twitching, eyes sensitive to certain types of light (in both cases) and sometimes double vision (in both cases-mine was horribly undescribable). All in all, this always seems to appear on the heels of a "cold" or the "flu". Researchers need to take it from there. Doctors need to give it a name for now to ease a patients mind.
The worst part is... in every case it has to run its course. You go into battle by yourself. - C.J.
c.j.- I had my first flu shot in years several months prior to this whole syndrome, and i will tell you i was sicker this past year with viruses that i ever was in my entire 5 years of nursing. i did not take one this year as i have my doubts of them. TO clarify my previous post, my symptoms started one month after an very bad flu, accompanied by severe noc sweats, ***** tonsils, fatique, and a round of antibitics. Also i would like to add that my neuro now is so awesome and understanding and never did she doubt my symptoms. my first neuro sent me on my way with out any explanations. a good neuro makes all the difference in the world. she has done my 3rd and final emg for muscle twitches at my request without hesitation and i think that shows great care and concern for me and my peace of mind, exspecially with an hmo, she never hesitates to do what needs to be done.lisa,rn
Doug 2 years ago my symptoms were exactly like yours and had progressed. My fasciculations were extreme, developed terrible headaches, duodenitis, GERD, elevated liver enzymes (Cronically)and blurry vision. All my symptoms fluctuate and get worse at night. Despite only an equivocal lyme test I started antibiotics about 3 months ago, initially had a bad reaction and more recently have had my first month of feeling pretty good in a long time. I was also very active and due to pain had to stop training for over a year (the first yr or so exercise helped me as well). I finally have started training again (very important to me, I didn't think I would ever train again). Serology has not yet confirmed a lyme diagnosis, but longer term antibiotic treatment does appear to be working. I had given up hope and did not believe antibiotics would work because my lyme test was negative. I am on 300 mp of doxycycline daily and for the first time have been able to stop taking other medications (protonix and klonopin). It appears I either have lyme or some other antibiotic responsive bacteria. do not know and as long as I am getting better, do not really care. Best of luck to you. I replied because your symptoms sound EXACTLY like mine did 2 years ago (everything including the tremor which is now extinct). -steve (***@****)
Amazing that I have spent $13,000 on tests in the last 16months and had to come here to find peace of mind! I had many of the same symptoms as Doug and others..here goes:
8/14/99- noticed "Prodrome" on way to work, confused, sweaty
8/15- very sensitive to heat...began itching on left side of neck and face/hot feeling. Thighs very itchy!
8/20- Feeling of "Death" overcame me. Body aches dizziness, confusion, etc.
8/22- Still feeling ill- layed down only to have "Sweat" attack within 2 minutes of laying down. Also awoke at 2am and both arms were numb from the shoulders down! When I stood up I I could not see well from my left eye. Drove to emergency room and they told me not to worry...I had a sinus infection!
8/28- after another week of the sameplus...Tremors, rapid pulse rate, and a cat scan that showed nothing wrong with my sinuses, and 13lbs later.....I decided to tell my doctor to "just figure it out!" I told him I hadn't used my health insurance in 8 yrs...so don't feel guilty!
waited 4 weeks to see Infectious disease specialist...tested for:Lyme, Histoplasmosis, Epstiens Barr, CMV, and 8 other items. Meantime, Neurologist did MRI for brain tumor along with bone scans for pain in Arm and face.
My symptoms come and goand my CNS seems very sensitive to light and sound. The Nerve pain in my face and weakness/numbness in face shoulder and hand are back along with nerve pain and cold chills in thighs and rump. I always feel best when working out, but rarely feel like it.
I would love to learn more about Post-Viral peripheral neuropathy! (My Doctors would too!)
I see we all have those muscle aches and Fisculations. to have had these problems for 2 and 1/2 years now. Horrible muscle aches and facial pains.I was in great shape at 35 i was still playing full contact football for the NYPD. Now I sit in pain everyday. I have had lymes test and over 150 different blood test. I have been in the hospital 5 differnet times
I have had high muscle enzymes and a slight elevavation in thw white blood celles in the spine.
They also discovered a mass in my temporal lobe 4 mris latee no change.(they say a blunt trauma injury).
Now they have foun a buldging disk in my thorasic spine the abuts my thorasic cord? What to do next. I have 3 young childeren and a beautiful wife. I say one thing I will neve give up and fight like hell to get better. Yes I have some ral bads days but hopefully they will end.
Keep the faith fellow posters,don't let them tell you its in your head.If they say that change Doc's. There are some wonderful Doc's who also will not give up
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