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Post Viral Syndrome

I was diagnosed with post viral syndrome this February 2009.  I had pneumonia in November which turned into asthmatic bronchitis.  While I was on all the medications, I developed very odd symptoms:
tingling/numbess in hands and feet (sometimes lips and face)
burning and cold sensations throughout my muscles
my body shakes/tremors
weakness and some pain, more weakness in arms and legs - the weakness is better but in the arm that I use (my right arm it is more persistent and intense)
upset stomach
stiff fingers that don't seem to work like they used to
sleeplessness
muscle twitches
muscle soreness
I have been to my doctor so many times and she kept telling me that I was just recovering from the pnuemonia and that I was anxious and the put me on ativan.  I am anxious but it's because of all these unexplained symptoms.  I saw a rheumatologist that said I have fibromyalgia and I'm going for aquatic physical therapy for that.  I saw a neurologist who found nothing neurologically wrong with me and said it's post viral.  All my bloodwork has been normal and every doctor does not think it's anything pathological.  The weakness in my right arm and the shaking/tremors are very unsettling to me as are the stiff fingers that don't work like they used to.  The symptoms do vary from day to day and I have good days and bad days.  When will this all go away?  Are there any treatments for post viral syndrome?
Stefanie


This discussion is related to post viral neuro syndrome.
106 Responses
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Avatar universal
hi stef, i'm in the same as you, only  i had pneumonia 18mths ago and never recovered since.  i had very bad leg weakness and leg pain at night and now have a weak leg wears out when i walk on it but it looks fine so docs say there's nothing wrong with it. after a lot of tests which i had to get done private they say chronic fatigue/post viral. My job is gone (which i loved and lived for) because of it being physically demanding,my home is next cos i'm not able to keep up with repayments and docs just say they'r happy to tell me its nothing serious, probably improve after 2 yrs! I dont even have the main symtoms of tiredness' brain fog' chronic sore throat that signals chronic fatigue and still thats what call anything that doesnt fit in the box. Sorry for the rant but i'm completly stiff tonight and not able to keep up with everybody else so the internet becomes a friend. Hope you fare out better than i have or at least get some help from the medical profession.
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1 Comments
@jellylegs - 07/09/2017. It's been so long since last time you posted. How are you doing now? Have you recovered? I am very sorry about what you had to go through.
Avatar universal
Hi,

Did you ever get a definite diagnosis?  I am a 46 year old male who was totally healthy up to 6 months ago.  Bikram yoga 2 days a week, spin class, cycling, gym, swimming, hiking.  I then started to experience the same symptoms you have described.  This was after a short illness which I thought was just a flare up of facial cold sores (hsv1).  My primary ran a bunch of blood test that she told me were normal.  She sent me to a neuro who did a leg EMG, more blood tests, spine xrays, and a spinal tap.  All were normal but they did find some lesions on my brain that were not consistent with MS.  I am actually going to another neuro in Calfifornia in mid-Dec for a second opinion because this current neuro lived up to his reviews, worthless!  I finally decided to spend the money and go see a naturopathic Dr.  She took one look at my labs my primary ran and noticed some issues.  She noticed my neutrophils and lymphs were a bit abnormal.  She was surprised my primary did not point this out because this showed I was definitely fighting some type of infection. She also pointed out, while my MCV was in normal range it was still very high.  This is a sign of vitamin b deficiency or anemia.  The neuro only did a serum lab test for vitamin b which showed my levels were high.  The naturopath stated vitamin b serum is worthless because it only shows your levels for that day.  So if you ate something before the test high in vitamin b it will show high levels.  The naturopath is running her own labs on me and she is checking if I have an food allergies and nutrient deficiencies.  So what I am getting at is you may want to seek out a different type of doctor.  My first encounter with the naturopath was good and, so far, worth the money.
I hope you are getting better or have fully recovered.  Let me know.  Thank you.
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Avatar universal
Hi I have had the band feeling for five weeks and numbness in both legs and constant pins and needles in the soles of my feet, it took me weeks to see a Neurologist but now waiting spine mri as he thinks I have Myelitis or Guillain Barre . I was in hospital for four days and discharged with post viral leg weakness I knew it was more than this and very lucky my own doctor pushed to see a neurologist who knew it was serious straight away, good luck with all your tests, I really hope it goes well for you.
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1 Comments
Hi, What did you find out?
Avatar universal
Hi I have had the band feeling for five weeks and numbness in both legs and constant pins and needles in the soles of my feet, it took me weeks to see a Neurologist but now waiting spine mri as he thinks I have Myelitis or Guillain Barre . I was in hospital for four days and discharged with post viral leg weakness I knew it was more than this and very lucky my own doctor pushed to see a neurologist who knew it was serious straight away, good luck with all your tests, I really hope it goes well for you.
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Avatar universal
I'm really scared and concerned. I've been experiencing what started out as slight dizziness since December 2014. I am a long distance runner (marathoner) and as such thought it may have been attributed to dehydration. I went to my primary who did an ekg and drew blood for a cvc, chemistry, thyroid and b12. My exam and results were fine. They gave me a script for meclazine and told me to see ent. About two weekends later my dizziness (more like a fog) was back again but also more episodes of tingling. This time I went to the ER. They did a similar workup and (blood, ekg) but also did a CT of my head. All again came back clean. I told the doctor that a lot has been going on in my life: lots of stress at work, 2 young kids at home, a master's program I'm finishing and training for a marathon. They said that perhaps it was dehydration coupled with stress and sent me on my way with a short term Xanax script. I also had a relative (radiologist) read my brain imaging and he confirmed it was clean as could be. Afterwards, the Xanax seemed to work but I only had but a few days worth (0.25mg I used x 6 days). So I went back to my primary. They did an assessment and said I had high anxiety and prescribed a months worth of Xanax and started me on lexapro. Ok, so I followed the same course with the Xanax (prn x 0.25mg) and was on lexapro (10mg) for about a month. Around 3 weeks into my lexapro I developed some twitching in my calves. It freaked me out so I stopped the lexapro in a short turnaround (a week or so).  That was about 3 weeks ago. Now my symptoms are weird: twitching (mostly at rest in my calves, thighs, and sometimes upper body),  tingling randomly all over, bubbling feeling under my skin in my back, occasional burning and a sense of nervousness. I've never experienced true numbness but sometimes I wake up and my arms feel like they were asleep (just for 30 seconds or so). Also, perhaps secondary to googling everything on the matter, I feel like my arms are kinda weak and my finger joints are stiff. Perhaps health anxiety but it *****. It is worse for sure when I am truly feeling stressed, but I don't think I'm a stressed person all the time, so it worries me that I have MND, MS or something else. The symptoms seem to be stronger some days and lesser others. I also thought maybe Lyme's because I lived in Pennsylvania (now in Florida) and am outdoors a lot (I believe my dog died of a tick borne Illnesss in 2013).

What is going on with me?
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1 Comments
Did you ever get to feeling better? I have been having almost all of your symptoms and its been 4 months.
Avatar universal
You have every right to feel anxious. These symptoms are scary. I think doctors define anxiety as "fear for no reason" but you and I have have had plenty of good reasons for fear. I decided that anxiety is definitely not the problem for me. They tried to put me on antidepressants ... I refused. It's not the problem it's just another symptom.
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Avatar universal
Hi, For my mycoplasma pneumonia I took Doxycycline, Azithromyacin and then Levofloxacin which seems to work best for me. I've been taking them for over six months and am finally starting to feel like myself again except for a weird neck tremor. Have you only taken the Doxycycline or have you tried other antibiotics and for how long did you take them? Antibiotics can make you sicker before you start to feel better. They made my symptoms worse for the first couple days, then I felt steadily better.
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Avatar universal
Hey there. I have had many of the same symptoms that you have had. Especially fatigue, my wrist is always popping and going numb along with the toes of my right foot. Really freaky. And now I have this tremor in my neck that shakes my whole body.
I had mycoplasma pneumonia which I was on antibiotics for months.
How long did you doctors put you on antibiotics for?
Cheers,
Alexa
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Avatar universal
hi Stef
I am writing you this in 2013... hope you get it..
I had similar symptoms for 6 months last year and now they are back for 2 months already
All I wanted to ask you-did your symptoms ever come back? how do you feel today?
Mine were caused,I think , by CMV infection that become reactivated..
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Avatar universal
How are you feeling now? I have been having the same symptoms for a year. All docs say post viral and will go away with time. Are your symptoms better almost three years later? I hope you receive this post.
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Avatar universal
Hi,
I hope your feeling better since this was posted in 09.  My daugher was diagnosed with post viral as well.  She has had many of the same symptoms as well.  She has had numerous test and exrays.  After 6 months of getting nowhere I started doing TONs of research.  Found that milk allergies are linked to many post virals.  Mentioned it to the dr. and he said that there is no whay milk could cause all her symptoms including the severady.  Well 4 days of a milk free diet and she is pain free.  It's a hard diet to follow but Damn is it worth it.
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Avatar universal
Your symptoms are identical to mine,I have sensations of weakness in my right arm, some days my left arm also feels heavy and weak, and I have constant widespread twitching mostly in my legs, but the twitching is everywhere all day long. all of this came on after I had walking pnomonia. Very stressed and afraid it could be something serious. Dr doesnt seem too worried about it.
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Avatar universal
just wondering did you ever get a proper diagnosis or reason for symptoms
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Avatar universal
have you all seen the new studies on the virus XMRV that is said to cause PVS (aka chronic fatigue syndrome).  Also most people with CFS also have Fibromyalgia - and Fibromyalgia has a whole slew of symtpoms (many like you are all describing), not just achy muscles.  FM includes the insomnia, the feeling of having swollen hands & feet (or other body parts), the itching, burning, jerking....   Think many of you here need to do more research about Fibromyalgia and CFS because it's most likely what is going on.  I've had it for years and years - it never goes away just comes in cycles whenever my body is under any kind of stress (like a cold or when I had pneumonia in December 09, still haven't recovered from that!).  So stress reduction and staying healthy is the key to reduce flare-ups!  MS tends to give you some scary optical symptoms (severe eye pain, blurry or double vision) which is what gets the docs to start looking for an MS diagnosis (my sister has MS).  
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1241416 tn?1268272874
I am so glad I found this forum.  I have many of the symptoms all of you have spoken about.  In late December, my husband & I had mild cases of H1N1.  He got better fairly soon.  I developed the following symptoms:  Severe pains, redness and tingling of the R hand; swelling & severe pain R foot; severe sciatic like pain of the left butt and hip radiating down the L leg to the knee, feeling like someone is cutting my leg off and leg feels like it is going to buckle; sandy feeling in the eyes; low energy; occasional brain fog; occasional nausea; occasional neck pain.  Went to a Naturopath who put me on a wellness regime to build up my immune system...still going to him; tried acupuncture which did nothing; had extensive blood work done which came back PERFECT.  What is VERY interesting to note is that I have severe allergies and asthma, ALL OF WHICH HAVE DISAPPEARED with the emergence of this.  I am currently diagnosed with Sciatica which my Doc thinks I acquired from not warming up enough at the gym.  He also thinks the swelling and pain in my right foot are due something happening at the gym.  I am currently going to physical therapy which is helping, especially the exercises, the deep nerve stimulation and hot, wet heat.  What the PT is having a hard time with is the fact that my symptoms peak up and down, not a normal recovery period for sciatica.  My Doc also just diagnosed me with Post Viral Syndrome.

What is interesting is that about two years ago, had milder but similar symptoms which lasted 6 months.  Started at work with one person.  I then had clients, many of whom were also complaining of "pain all over."  Reported it to administration who did nothing.  

This forum is immensely comforting.
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1056589 tn?1273747102
This sounds very much like Transvers Myelitis. I was diagnosed in 7/09. Back in 1/09 I got a cold. About 2 weeks afterwards I started to have a bunch of weird neurological symptoms. Numbness,tingling,burning,itching,bowel/bladder issues and a host of things I had never felt before. I went to a ton of doctors and had tons of tests. All were normal except for an ANA tests. Unfortunatly they were doing the wrong tests. They were not looking for a needle in a haystack like TM. It is pretty rare. I finally found a neurologists who knew what I had right away. TM is an autoimmune reponse where the body attacks the spinal cord. It happens when there is stress on the body like a cold,surgery or stuff like that.Symptoms are like MS. But unlike MS, TM  does it's damage and is not progressive. It can take up to 2 yrs to recover from TM. 1/3 recover fully,1/3 partially recover and the remaing 1/3 don/t recover at all. But there is a greater chance of developing MS if you have TM.
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Avatar universal
In January 2008 I had a flu shot..Four weeks lated I was flat on my back and thought
I ws going to die...I had no fever, vomiting, etc...I just coldnt move..
I was so healthy that I didnt even have a regular Dr...My boyfriend carried me to
the hospital so many times...The leg pains were so bad that I wanted to cut them
off...Too make a VERY long story short, Symptoms I had were: severe leg pains,
difficulty swallowing, eyes kept trying to close, burning fee..As the months wore on,
I have seen every DR possible, had every test possible, some multiple times..
I have 3 grocery bags of meds that I could not deal with..I hae dealt with more
narcissium by male and female DR's than I ever care to...It wasnt until I found a
very caring Pain MGT Dr that I have started feeling better..Yes, you DO have to
try to be calm through all this because the stress and anxiety makes it worse..
I have doubt I have Post Viral...It was not Guillian Barre because Spinal Tap was
normal...Nerve biopsy was normal..Im finally just on Tramadol which has saved
my life and Combunox for break-through pain..I am on my 3rd  Epidural Steroid
injection and it works like a miracle..It does not sure you, but gave me about 5
weeks of being pain free so I could re-group and start again...It does get better
but it takes ALOT of time...You will never find the cause so stop looking..You
need to treat the symptoms and thats working with meds, treatments and injections
that help you..Do not settle for a Fibro diagnosis..You have Post Viral Syndrome
and you my friends are not crazy...There are thousands of us out here with this.
Every virus is different and the way it effects your body is different so no two of
us may have the same symptoms..Just remember that you ARE sick you
really ARE in pain and you dont have to prove it to anyone..Keep fighting to feel
better and get rid of all those DR's and find one very caring Pain Mgmt Dr..
Im a year and a half into this...As a single Mom who runs a business I had to
fight everyday to get up and get to work..I cried everyday, but promised myself I
woulnd not do it in front of my son anymore..Find your time to cry..Its OK..
So,,Tramadol, Combunox, and steroid injections have made me be able to live and
I also set boundaries..If i cant make it to something or dont want to so something
I dont do it..Love yourself..take care of yourself..We all validate you..
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Avatar universal
Wont go into the Technique--will skip to findings
Findings:
L1-L2: Within normal limits

L2-L3: Within normal Limits

L3-L4:Mild changes of degenerative disc disease are seen at this level with mild lateral bulging of the disc margins. Mild facet arthrosis is also seen posteriorly. No HNP is identified.

L4-L5: A broad based,3mm, posterior anular disc bulge is present.  In concert with facet arthrosis, there is mild to moderate narrowing of the neural foramina seen bilaterally along with mild concentric canal stenosis.  There is some increased signal present within the lateral margins of the posterior anulus suggesting anular tears.
L5-S1: Mild degeneration of the posterior facets is seen at this level. No HNP or spinal stenosis is seen.

Signal within the vertebral bodies is normal throughout.  The conus ends normally at the T12-L1 Level,

Impression:Impression:
Mild nueral foraminal and spinal stenosis are seen L4-5 level due to a small broad-based disc bulge and posterior element hypertrophy.  There appear to be small anular tears at this level as well.

Thoracic

Findings:  Changes of degenerative disc disease are seen in the mid and lower thoracic spine.  There is a broad based, 3-4mm, central disc protrusion seen at the T5-T6 level resulting in mild spinal stenosis.  The canal diameter has been narrowed to approximately 8mm.  A 2-3mm disc protrusion is also seen centrally at the T6-T7 level resulting in mild spinal stenosis.  Canal diameter has also been narrowed to approximately 8mm at this level.  A broad based,2-3mm disc bulge is seen at the T7-T8 level.  Canal diameter has been narrowed to 9mm, A minimal,1-2mm disc bulge is also seen at T8-T9.

Signal within the vertebral bodies is normal throughout.  There is no evidence of a significant compression fracture seen.  Signal within the thoracic cord is normal as well.  No abnormal enhancement is identified.

Impression:Impression:
1. Mild to moderate spinal stenosis is seen at the T-5-6 and T6-7 levels due to small herniated nucleus pulposus.

2. Mild spinal stenosis is seen at T7-T8 due to a braod-based disc bulge.
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Avatar universal
Boron, I sent you a PM. Padro thanks for you help and your concern. Keep your head up buddy!
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Avatar universal
Boron has been a good friend to me for some time and will really have some good imput--I know you and I have talked in the past Boron is a good source   Padro
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Avatar universal
Hi, would you mind to disclose your history of your neurologic symptoms (tingling, burning, back of the head issue...). I'm monitoring Padro's issues for quite a while now, and trying to figure out the cause.

Have you ever had low body temperature, poor appetite, gaining weight, slow heart rate?
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Avatar universal
Hi. My uncle had that band-like ribs tightness - it was Lyme. When Borrelia attacks nerves, it's called neuroborreliosis. Antibodies against Borrelia can be found in spinal fluid (by lumbar puncture). At the time Borrelia is in nervous system, it can already be cleared out from the blood, so negative blood test doesn't exlude neuroborreliosis.

Do you have upper (under ribs) or lower (left, or right) abdominal bloating? What happened 2 weeks ago - you started with some medication, changed diet..?

I have some medical education, and I've studied these things a bit lately...
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Avatar universal
Post Infectious Encephalomyelitis any thoughts this is from last Nuero visit??
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Avatar universal
MEDICAL PROFESSIONAL
It is now commonly accepted that all represent a postviral syndrome whose dominant symptoms include exercise-induced muscle fatigue.
There is no cure for chronic fatigue syndrome.
Chronic fatigue syndrome (CFS) is a condition that causes extreme tiredness. People with CFS are so tired that they are unable to carry on normal activities for a period of at least six months. They also have other symptoms, such as pain in the joints and muscles, headaches, and sore throat. There is no single known cause for CFS; it appears to result from a number of factors.
More detailed studies showed that people of every age, gender, race, and income group can get CFS. The group most at risk for the disease, however, is women aged 25 to 45 years.
Estimating the number of people with CFS is difficult because its symptoms are so similar to those of other diseases.
Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen, can be used to relieve pain and reduce fever. Antidepressants can be used to help patients relax and feel less depressed. Antianxiety drugs, such as benzodiazepines are prescribed for people with anxiety that has lasted for at least six months.
Nutritional supplements such as vitamins A, B12, C, and E, as well as some minerals, are used to treat CFS. These supplements are thought to improve the immune system and improve mental functions. Some CFS patients report improvement after using certain herbal medicines, such as echinacea ,garlic, ginseng, ginkgo, evening primrose oil, shiitake mushroom extract, and borage seed oil.
Take care everyone!






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