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Post Viral/Infectious Neurological Symptoms

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amanda0331
amanda0331

Hi everyone! 

I’m just curious for those of you that experienced any sort of neurological symptoms after a virus/vaccination or otherwise, if it is (getting) better or progressing. 

Long story short, I was very sick the week I delivered my 3rd baby 14 months ago (upper respiratory/sinus infection). 1.5 weeks postpartum I began experiencing sensations of numbness/tingling in various parts of my body, that then also included muscle twitches, vision disturbances (flashes/floaters), light internal buzzing/vibration (feet, constant if sitting still), the bottom of my feet feel “off”, not sure how to explain it. 

Anyway, I’ve seen over 30 doctors in the last year, including two trips to the Mayo Clinic (consult with their director of neuroimmunology, Dr. Pittock). I’ve had EXTENSIVE negative testing (EMG/NCSs, lumbar puncture, MRI’s of brain/c-sprine/thoracic/breast, CT’s of pelvis/abdomen, ultrasounds of neck/abdomen/pelvis, chest x-ray, echocardiogram, EKG, numerous physical  neuro exams by 5 neurologists, TONs of blood work, including specialty tests for thyroid, autoimmune, paraneoplastic, etc.), ALL normal/unremarkable, EXPECT, my ANA is positive (last draw 1:80, was higher at the onset of symptoms), but negative for all specific autoimmune disease; and EBV appears to have reactivated (likely due to pregnancy (negative IgM, but positive Early Antigen IgG). 

The doctors at the Mayo said hey thought my immune system was stirred up by the virus I had during delivery, and that that combined with a “highly sensitive” neurological system resulted in my current symptoms, so basically some sort of post-viral phenomenon. They thought it would resolve with time, that it wasn’t progressive, but I still worry what will happen in 5, 10+ years. I honestly feel pretty good, I’m just hypersensitive to all of the little sensations, so I’m hyper aware. 

Thanks for your help! 

0 likes, 11 replies

11 Replies

  • dawn68509
    dawn68509 amanda0331

    Posted

    Hi Amanda I'm very similar to you I woke up Dec 11th 16 with tingling in both feet within hours spread to my knees then into both hands it's been there none stop ever since ,I do not have a second without this buzzing tingling vibration I got pregnant 3 months after it began and 8 weeks post partum it went crazy spread to top of my arms was always at wrist and then muscles started twitching in my legs as well ,I've had all tests brain mri spine emg 3 nerve studies numerous bloods all normal they tell could be reaction in my body to infection and now nerves hypersensitive it's got where if I touch my upperlegs where I have no tingling it sends my lower crazy I'm absolutely fed up with it I'm currently on cymbalta which has taken it down a notch to a level I can manage and lifted my anxiety a bit as this condition has lead me to think I am dying most days just don't understand how you go like this yet nothing can be found wrong big hugs to you

    • amanda0331
      amanda0331 dawn68509

      Posted

      Thanks for the reply, Dawn! Dr. Pittock did say I may always have these weird sensations, but when I have a feeling of numbness/tingling, instead of thinking I’m dying, to just think of a “highly functional nervous system” lol and that it should aid in my recovery. I do feel better after meeting with him that it’s not anything SINISTER, but I still have a lot of anxiety from it all.

      I actually asked my neuro for a prescription for Cymbalta to hopefully calm things down a bit, but I haven’t started it yet. He put me on the lowest dose (I think 20mg?), so we’ll see!

    • dawn68509
      dawn68509 amanda0331

      Posted

      I'm on 30 mg it has helped a lot been taking since May and it's definitely helped with the mental exhaustion of having this the tingling has gone from a 7/10 to around a 3/10 I've had no side effects from it at all so I would definitely give it a try

  • caroline70988
    caroline70988 amanda0331

    Posted

    Well they should of u need to ask them they should realize to do spinal tap for gbs ( Gillian Barrie syndrome ) it can happen after infection that was not cleared or flue shot or shot that affected u . But many cases due to a viral infection .I had it some ppl get it worst then others do you get nauseous also not feel right ? Besides those that your speaking of hun ? I had it bad took them me bring in the hospital 10 days I was so sick every day I was deterring the same emergency doctor kept sending me off saying I had sever axiety , depression think they say that to every one here’s pills . He was getting up set with me came down to the 10 day called ambulance was with my hubby my friend came up again ambulance asked me question I fell to the ground being paralyzed . This story long but in order for them to check for it is spinal tap they didn’t do this cause gbs is 1 out hundred thousand . Every thing u had done I had done I was on life support plasma 1 year hospital even when they sent me home I was still paralyzed had Psw till 2 years I’m walking now but can’t do long distance or run I can go up stairs but when I go down I take my time I can’t go down normally like going down on my knees getting up special way to do things I’d advise u to bring this to there attention see what happens. Plz let me know what they say try exerc. 
    • dawn68509
      dawn68509 caroline70988

      Posted

      Caroline I think gbs is picked up on emg so I was told by many different Neuros if nerve studies and emg are clear it cannot be gbs but I have read online of small fibre neuropathy coming on acute like gbs as another form of it ,Neuro I last saw in May said he'd never seen someone like me in 30 years he's been a dr as in for me to still have none stop symptoms after 19 months solid with no improvement at all

    • amanda0331
      amanda0331 caroline70988

      Posted

      Hi Caroline! I’m so sorry you’ve had to go through all of that, praying you recovery continues quickly and smoothly! I had a spinal tap done at the Mayo Clinic, and it was normal. I honestly feel pretty good. I have three small children (6, 3, 1), so I stay busy, and it doesn’t physically interfere with my day to day life ... it’s just the mental aspect of not having an objective test/result to give a name to what happened. So, perhaps a variant, albeit extremely mild, to GBS is certainly possible, but after 14 months and normal exams, scans, LP, etc., I’d hope if it were classic GBS, they would have labeled it as such. 
    • amanda0331
      amanda0331 dawn68509

      Posted

      I think mine is likely some form of post-Infectious small fiber/autonomic neuropathy as well. I was supposed to have a sweat test while at the Mayo, but ended up missing the apppointment due to an excruciating post-spinal headache (and subsequently, a blood patch performed that day). The neuro at the Mayo said he didn’t think it would add much, and that it was ok to not stick around just for the sweat test. I did, however, make an appointment with a neurologist in a Houston that specializes in autonomic testing, including their own lab for small fiber neuropathy skin testing, so we’ll see what he says. I just want to be able to move on, and I thought I’d be able to do that after an extensive trip to the Mayo and getting the al clear from literally one of, if not, the top neuroimmunologist in the world .... but I’m stubborn lol 
    • caroline70988
      caroline70988 amanda0331

      Posted

      Your a very smart lady you know your stuff . Do you think it could be neurological? You know gbs it’s like close to the same as having ms . I hope you get better knowing you have young children at home . I was very lucky my kids were older and on there own the sad part is , is giving your kids the right to speak for you . My oldest told dr to put me on life support they didn’t know either that or die . He made the right decision or I wouldn’t be a live today . Love my kids more then life . It’s hard being sick having axiety , depression due to being sick . But I’m so alive doing even more and living g for my grandchildren 9 of them lol at 56 I’m so blessed . . I hope they find out hun what’s going on stay strong I know it’s easier said . Us sick ppl we have to stay strong minded other wise . One thing I learned being sick and I cried many night is to smile say good morning always try help others when u can and I pushed hard think that’s what kept me alive . God bless you your kids , family let us know how ur progressing hugs.
    • amanda0331
      amanda0331 caroline70988

      Posted

      Aww, so sorry, but glad you’re here today and your kids made the right decision with the doctors :-) Yeah, it’s for sure neurological, but immune mediated, just as it is with GBS, albeit  a much milder (perhaps chronic) variant. But, given that I’ve had such extensive testing that has been negative, there’s not much else I can do at this point. Since they couldn’t tell me objectively what was wrong (ie: test to prove), I just wanted them to rule out everything BAD that it WASN’T, which I think they’ve done. Best wishes to you! 
    • caroline70988
      caroline70988 amanda0331

      Posted

      Best wishes to you but still keep in touch I really hope all will get better . Do you get any physio or do you go to the gym ? Because it’s inportant with these issues its very inportant I have to lose but weight when they up dosed my depression pills I gained but positive to lose it . Swimming is great to because it helps with this kind situation . I finally can swim with know help any more but won’t go deep since my breathing  is not the same . When you swim you won’t feel any of these feelings really helps . When I first got gbs when I got home I read some stories read lots on many people having gbs I look ed at my self . But I thought u should see these videos you tub one is young girl think about 30 she did a video on every day life after she had her baby she got gbs right after delivery . Reminded me on how you said you had baby all the sudden bang you have some issues think you should watch it . I cried but also cry for many people like us that have to suffer but think you should try go few times a week exercise it’s good for people like me you and others on here . I’m gonna start vitamins , minerals some fivers drink more water which I don’t I should. If u do watch it let me know was very sad but like me she pulled through seems younger you are getting it they never had any issues after . But when ur older seems there’s long term issues . 
  • tracey51815
    tracey51815 amanda0331

    Posted

    Hi Amanda

    I am so sorry to hear what has been happening to you.  

    6 months ago I had botox in frown lines to assist with headaches; no headaches since(!) but 3 days later following the injection I got white spots in my throat (not bacterial as confirmed by swab) and a feeling of unwellness and not being able to eat much.  Following a whole load of gastro tests I was diagnosed 4 weeks ago with Gastroparisis (possibly post viral although I cant remember having a viral infection!)  and given a drug Domperidone (10 mg) within a day of taking it I experienced all the symptoms you describe,  buzzing in legs,  twitches and have stiff and weak calf muscles especially when getting up after sitting down and when I wake up in the morning my body was trembling slightly and finger joints ached.  I also took the drug for 3 days and stopped. Last week I saw a neurologist who carried out some tests (reflex, looking into eyes, tongue etc) and he said he couldn't think of anything other than an over zealous nervous system reacting to the drug or an immune reaction following the botox which had affected my gut!   3 years ago I reacted to another drug Gynest pessaries given after a couple of water infections; that brought on immediate blurred vision   dizziness   numbness in toes and hands - all it went except I have numb toes on left foot. I had all the usual neuro scans you have had and nothing showed up so they put it down to the fact that 8 years before I had had disc surgery and the nerve conduction test done on the foot as it only showed up nerve damage in back (I guess due to op) they put my numb toes down to that.  Following my latest drug reaction I am inclined to believe that it was just another example of how my body reacts to prescription drugs.

    I am now awaiting result of an ANA test to see if I have any auto immune issues.

    all the best    Tracey 

     

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