post viral illness

[tania again, add to question]

hello.  i had an upper respiratory infection in mid April. about four weeks later, i had some tingling sensations in my legs and my head.  since then, i have had lots of joint pain (mainly in my neck, big toe, and knee), still some tingling, and twitching everywhere (even in my eyes).  I have even had two styes in my eyes in a five week period, which i haven't had a sty since i was a small child, and i am now in my thirties.  i have had blood work tests (came back normal), nerve conduction test on my right leg (came back normal), and spine mri and brain mri (also came back normal). i am wondering if post viral can cause this even though i had the repiratory virus in April and the neuro symptoms didn't surface until May?  please tell me what post viral is and how long it occurs after an infection. also, please tell me how long it lasts and how it is diagnosed.  any help would be appreciated.thanks.

[CCF Neuro[P] MD, RPS]

Dear Jill:

There is not too much to tell you, unfortunately.  We do not fully understand how viruses can cause disease after the intial infection.  There are some well known diseases that we think have a viral etiologies such as Guillian Barre, chronic inflammatory demyelinating polyneuropathy, plus many more, and many think chronic fatigue syndrome.  As you can tell, the wide range of diseases, the different symptoms, and the duration of each varies and from patient to patient it can vary.  Your symptoms may or may not be viral related (difficult to tell over the internet but they do sound post-viral) and may last a few weeks more or many months.  There are really no diagnostic test that will tell a physician that their patient has a post-viral disorder.  This is especially true if the intial virus that caused the infection is unknown.  

I am sorry that I am not much help.  I do hope that your illness is short lived.

Sincerely,

CCF Neuro MD

[Me Two]

Hi Jill:

I had the same thing. It happened about a year and a half ago. Terrible nerve pain and tingling from head to toe, twitches, odd pains, you name it. Had every test in the book - MRIs (head and neck), Nerve Conduction (arms and legs), repeated blood tests for everything from the benign to the implausible. All that ever showed was acute viral thyroiditis, a self resolving condition which proved I had suffered some sort of viral attack. One neuro (of the several I saw) said it may have even been mild Guillain-Barre (though I never had a spinal tap to confirm). Mild or not, I was a complete mess. Saw an Infectious Disease specialist too. He said post-viral. Now, over a year later, I still have tingling in my legs and feet, but the "acute" symptoms are gone. I'm actually feeling relatively healthy again and do my best to ignore the residual tingling. You will feel better too, eventually.

By the way, I was a healthy 35 year old female when it happened. I turn 37 in a few days.

Hang in there...

[Reenie]

I've never been formally diagnosed with post-viral, but have had the same types of problems for about 5 years.  I'm better, but far from cured.  Despite numerous doctors (neurologists, neuromuscular for neuromuscular sx and migraines, oral pathologists etc for mouth sores and trigeminal neuralgia, opthamalogists and neuro-opthamologists for visual problems, internists for fatigue, etc. I could go on and on unfortunately...) I have been unable to get any sort of concrete answers re. this syndrome.  There are many of us out here and my personal goal is to get us some real help beyond the typical attitude of "it isn't killing you; live with it."  While I do understand that there are many many diseases out there which are fatal and involve even more suffering, I believe that these types of problems do disrupt people's lives in a profound way.  They certainly do destroy the quality. We need a cooperation between neurologists, infectious disease specialists/virologists, and immunologists to come up with some good research and trials.

[goodgal31]

Im with you,  WE all seem to be suffering from something, when all tests come up its anxiety.  One thing though is alot of those nerve problems, post viral etc, are magnified with stress causing them to be worse.  So who's to say its stress or anxiety causing it?  I am sure stress plays a large role in how we feel, and I agree with you, there are many diseases that are fatal and very painfull, but what we suffer from is real and far from normal and "comfortable".  I dont think some people can understand or they tend to blow us off as "crazy" or anxiety ridden.  I personally dont know how I can make my vision worse, my pupils dialate funny, my feet to hurt and tingle, my face to burn, twitching all over my body etc.  I know the mind has tremendous power, but has anyone entertained the thought that it may be a post viral exaburated by stress?  I guess there is alot modern science cannot figure out, but bottom line is, we know something is off, or something is "not right" and its hard to live with this.  I have found that a certain anti-depressent made me feel pretty good, but then my vision was horrible.  So I switched to find I was having horrible withdrawal even though I was told, no its to low a dose.. so my head was an ocean for a week... now on something new, it is not working.  Who knows but Im sure at some point in time it will pass, and we will feel better.  I try to think of other things, stay interested and I "try" to have fun.  Good luck to you all and just know your not alone!

[Amy]

Can science not figure it out, or do they just not give a damn!!!
I'm tired of not feeling well, spending all of that money to get told it's anxiety.  It doesn't matter if it's anxiety or not it's still difficult to go on and on day after day not feeling well.

[Gary]

I went through the same deal. For a year and a half I saw 7 doctors. Three said that it was anxiety and wanted to put me on antidepressants. I kept looking. I found a doctor that treated medicine as a science and kept digging. He found a fungal infection as well as a mycoplasma infection. Today 8 months later, I'm almost fully recovered and living normally again. My point? If you're not happy with the diagmosis and/or the doctor, go to a new doctor. Search the internet, talk to other people. Word of mouth is the best way to find a doctor that cares about what he/she does.
Good luck.
Gary

[To Gary]

What tests did he come up with for the fungal infection and mycoplasma result?

Peter

[To Peter from Gary]

Hi Peter,

The doctor gave me a specific test for the fungal infection. As for the mycoplasma, it was a blood culture. They keep the culture for a while and see if anything grows. It was expensive, I have an HMO. But, it was my health. Worth every penny.

Gary

[Peter]

Thanks Gary. What are you taking to rid yourself of the infection,etc.

Thanks,

Peter

[To Peter from Gary]

Peter,

For the fungal infection, I've been bouncing back and fourth with Nystatin and Ketokonisol. For the mycoplasma, I'm taking minocycline. Both are low dose, long term. The fungal infection is just about gone. I still have a small rash. As for the mycoplasma, I will have to take another blood culture in the near future.
Gary

[pacca1000]

It hit me too.  Two years ago, a severe upper respritory virus that lasted two weeks.  I was dead to the world.  Three rounds of antibiotics and sorta recovered.  Then two months later another upper respritory virus.  More antibiotics.  Was down for a week.  Three weeks later severe fatigue set in that to this day would never go away.  My bladder shut down, burning pain in my legs, leg jerks, muscle aches.  Two years later, seven neurologists, three admissions into the hospital and every test in the book, (except an EMG and nerve conduction....someone screwed up there); I now have severe sensor/motor polyneuropathy and I will never get better again.  Shame on all the neurologists that did not perform the nerve conduction study or the EMG.  In hindsight, burning pain in the leg would indicate to me possibly some inflamation (inflammation) of the nerves.  To all the neurologists I saw, except the last one......GET YOUR SELF BACK TO MED SCHOOL.  Because of your negligence, I will most likely end up in a wheel chair.

[Reenie]

I am very sorry to hear of your suffering.  It is amazing how casually this post-viral syndrome is dealt with in neurological circles.  The inflammation issue is a biggie - I agree.  Mine always felt like an inflammatory polyneuropathy, but was not formally labelled as such because my EMG was normal.  E-mail me if you need support.  ***@****

[Reenie]

I am very sorry to hear of your suffering.  It is amazing how casually this post-viral syndrome is dealt with in neurological circles.  The inflammation issue is a biggie - I agree.  Mine always felt like an inflammatory polyneuropathy, but was not formally labelled as such because my EMG was normal.  E-mail me if you need support.  ***@****

[Tia]

I can't believe what I am reading here.  You all sound like how I have been sounding these last three months.  And my doctor is tired of me calling him and complaining.  He says he doesn't know what it is, all bloodwork shows normal, and toss me on anti-anxiety pills.
My symptoms are pretty much the same, severe burning and tingling on palms of hands, soles of feet, and face...driving me crazy!!! And to add injury to insult, I have been having severe leg cramps and now arm cramping up.
I am at wits end with this, losing all patience I have...which I really need with a 9 and 2 year old!!!!
Post-viral syndrome...interesting...I had walking pneumonia at the beginning of the year...then my girls came down with Fifth's disease in March.  Thought I had that as well...but they got through it with flying colors....me....still have all the symptoms of that....and its been THREE months...
I don't know what to do....other than find a bridge...these symptoms are making my life miserable....
Good luck to you all....and...I feel for ya!!!!I understand!!!
Tia

[Joan M.]

Your comment about the Fifth Disease is interesting. It's caused by a Parvo virus. You might have your doc give you a blood test for that.

Joan

[Tia]

Thank you Joan....great idea...and that is what I finally had him do today...we shall see.  I'm not totally read on the Fifths disease (parvo-virus), but it is supposed to last only a few weeks, with minimal symptoms.  But I guess there is a small percentage of poor souls who have it linger.
Again, thank you Joan for your suggestion, it was well taken.
Tia

[Reenie]

Hi Tia.  There was a female doctor on the Neuromuscular Forum of MGH a long time ago who checked in with your symptoms after having contracted Fifth's Disease.  I have a feeling that our symptoms are not caused by any one virus/bacteria, but rather it is an autoimmune response that our bodies are engaged in.  I think the trigger could be different for different people.  I don't think there is treatment for Fifth's Disease.  Maybe check into transfer factors and see if there is one for parvovirus?  Good luck.  I understand how it is to try to cope with children and feel like this at the same time: mine were 5, 3 and 9 mos. when I was "stricken."

[Carol55]

To Tia,
Tia, how did you make out on finding  if you had a
positive titer for Fifth disease?  The reason I ask
is because my daughter had it too,  7  yrs. ago at the
age of 6.  She was quite sick with it, symptoms like
you describe, but was over it in about a month.   But
I read if adults get it, it can be much more severe,
and the symptoms, like you describe can last for months.
A close friend got it, she is a 56 yr. old grade school
teacher.  She became so ill with it, she had to quit
teaching for the rest of the school year.  So, maybe
what you are describing to your doctors is Fifth's, and
they don't realize it.  There's a very simple blood
test to prove it.  My daughter had it done, and the
results were positive.
good luck
Sue

[Tia]

Well, its been four months and I'm still having all these symptoms...burning hands, feet, hands....incredible muscle cramps in legs....and strange sores on hands.  
As Joan and Sue recommended, I went and had the blood test done to see if it was the parvo virus "Fifth"...and sure enough, that is what it is.  I guess it can last a lot longer then a lot of doctors know.  AND they can't give me any sort of clue as to how much longer this will last.  Well, at least I can be relieved that it isn't LUPUS or something else more serious.
Again, I appreciate all the responses!  
And good luck with all of you that you will have a safe, fast recovery!
Tia

[Lady Jay]

Gary hit the nail on the head when it comes down to diagnosis and treatment whenever an HMO is your provider.  HMO has quite a definitive slogan, that being "Preventive Medicine", which means;  if they cannot prevent the dilemna, they sure as hell are not responsible for "treating" whatever it is they couldn't "prevent".  Getting a referral is non-existent, therefore you must pay out of pocket in order to acheive results.  If you are given a choice by your employer between the "cheaper" HMO and the little-bit-more expensive PPO, choose the latter.  It's "open choice" in the doc department.  If you need a specialist (and you know you need a specialist) then you can set things up yourself without the stinking referral demanded by the HMO (which is usually denied you).  Let Gary's advice stand.  Quit wasting precious valuable time.Walk away from the HMO and pay out-of-pocket.  You deserve results.  Good luck to everyone.

[Bobbi D]

Just wanted to say in defense of my HMO (MVP) that I have not once been given a hard time about all the tests I have had to have done - or all the specialists I have seen.  Sometimes I'm not so sure it's the HMO....could be the primary dr just doesn't want to do the paperwork or legwork or take the time to do a referral.  I'm lucky and have a wonderful caring primary who has no problem sending me for second opinions or to specialists because he takes the time to listen to me and believes me when I say I don't feel well.

[TO EVERYONE]

I, for one, would rather refer myself if I don't feel well.  Get the job done before you pay dearly by having to wait for the referral paperwork to go through.  I guess it all boils down to preference.  PPO stands for "preferred provider" and that's what I want.  I don't want to have to choose from a directory provided by the HMO.  That's all.  To each his own.

[Bobbi]

Okay, you're right and I'm a fool!!  I tried to get a referral to the Cleveland Clinic for some definitive answers and was told that my HMO would not cover a visit there or to Lahey or any other diagnostic clinic.  I'd have to pay the whole thing myself out of pocket.  Here I was defending them and they turn around and slap me in the face.  I've got one doctor telling me I have probable MS....another telling me possible lupus.....and a third saying its cervical spine compression causing all the problems (though everything I've read indicates that c spine compression does not cause the unbelievable fatigue I feel at times).  I thought a trip to the Cleveland Clinic - after reading all of the info on these forums - would be perfect to give me some answers and guidance. Guess they don't want me to have any answers! Sorry I questioned you...

[nathan]

i am in teh rash part of fifths disease. i heard that for adults, fifths disease can cause serious medical problems. does anyone know what they are? or how common they are?

[char]

I had the same problems as mentioned above with fifth's. My children had it and managed to get over it in a few weeks. I had joint inflamation (inflammation) that lasted two months. My internal medicine doctor would not test me for parvo.

He did an ANA blood test that came back positive, meaning there's a chance I could have lupus. He suspected lupus, but after doing some research on the internet, an ANA test can come back positive if you have had a virus or an infection. I really wanted to be tested for the parvo virus just to put my mind at ease.

I really don't think it's lupus I think my lingering joint problems are still the result of fifths. I think the medical world should take fifth's a little more seriously,especially in adults.

[Joanna78]

A related discussion, post viral? please help was started.