post viral syndrome

[lori]

Dear Drs.
I have seen several posts regarding post viral syndrome (which I have been diagnosed with after viral labrynthitis and viral meningitis this summer) but I have a question I don't believe has been addressed.  It has been six months and I still have poor balance, dizzy, and a host of neurological sensations that every doctor says is puzzling because all MRI's, blood work and evoked response are normal.  Burning skin, tingling, shivering, involuntary head movements like shaking head "no" and visual problems are just some of the symptoms.  Doctor has me on Clonazepam and Zoloft to try to settle the nervous system.

I understand from what I have read in this forum ( very helpful) that it will just take time to recover.  My question is, can post viral syndrome cause anything else later or permanently damage my health?  And how is it that the symptoms last so long after the acute attack.

Thank you for any insight.  You provide a great service.
Lori

[fionasuki]

A related discussion, post viral was started.

[lori]

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

[CCF Neuro[P] MD, RPS]

Dear Lori:

I am sorry that you have had lingering symptoms.  I am not sure if anyone can tell you for certain why some symptoms last longer in some people and not in others or why some people have the symptoms to begin with while others do not.  Some of the thought is that viral infections are fought by the body by the immune system.  In some people, the immune system thinks that the virus and the nervous system look alike and there is some, albeit only partial attack to the nervous system.  The degree of which determines the length of symptoms and whether complete resolution occurs.  The immune system itself has effects on the body itself, such as inflammation, joint pains, etc.  But again, I don't think we fully understand post-viral syndrome.  I hope that I haven't confused you too much.

Sincerely,

CCF Neuro MD

[apalal]

A related discussion, Post-viral - Will I be "sick forever" was started.

[Arleenlupe]

I'm not sure what is going on, but after seeing another doctor in the ER he mentioned Post Viral.
On Dec 3rd I noticed a bug bite that did not ich nor hurt.  Did not think anything of it. After two weeks my right hip was burning aswell as my lower  back. I have always suffered from lower back pain, but this was horrible. After two days the pain was all over my body. Every single joint hurt aswell as my muscles and bones.
At this point I see a doc who tells me you might have a virus. Go home it will go away.. No meds.
Two days later I could not sleep and went to the ER. I was givin some  Doxycyclhyc 100mg and pain killers I went home and slept for 25 hours no joke.

I then woke up with a fever and was down for 4 days and when I was finaly okay to get up on my own I noticed my right side of my body was very weak.

After another ER visit finally the doctor said you might have a post viral.  I am scheduled for a MRI to see if it's MS, but this seems pretty slim.

Here are my symptoms:

lowe back pain
joint pain everywhere
muscle pain
hips hurt
fingers hurt
Sick/ fever
bug bite that lasted over 2 months
NOW:
right side of my body is weak
right foot hurts when I walk
every joint pops all the time
right hip hurts still
lower back pain
nerves always move .. Less and less everyday
right side of my jaw hurts/ burns

I need help. The Mri is im Two Months.

Any help would be great.
***@****

[Allison191]

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

[Allison191]

A related discussion, post viral sydrome was started.

[caldy]

A related discussion, heart was started.

[melanie]

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?

[dawn campbell [email protected]]

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

[Beth]

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....

[Toni]

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.

[Doug Theobald]

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
***@****

[Reenie]

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.

[Lady Jay]

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?)

[To All Suffering - to Chris]

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

[Reenie]

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 ***@****

[Chris - TO LEE]

Lee,

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


Thank you,
Chris

[Jonathan's mom]

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).

[Chris - TO LEE]

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

Thanks
Chris

[Lady Jay]

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.

[chris]

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

Chris

[dory]

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.

[Lee]

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!