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Quickly progressing and worried..

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Kn03
Kn03

I’m 27 and otherwise have always been very healthy but in June I started having tingly fingers and toes. It was bearable but noticeable. By July my feet starting it burn and my fingers were in a constant ache. I began getting sensitive to hot/cold. In August, my symptoms worsen and I began feeling very weak. Walking was tiring, things that use to be easy like opening a jar became harder and the right side of my face was numb. I had an MRI- came back normal. Now it’s September and I have pain in my lower back, my legs loose all power when I’m sitting/lying down, my hands and legs feel like bee stings constantly, I have leaked when my bladder is full (can’t hold it properly), have horrible neck pain and just overall feel extremely weak. I have an appointment with a neurologist next week but I’m so full of anxiety already and wondering if anyone else had these symptoms and what did it turn out to be? 

1 like, 7 replies

7 Replies

  • Jhow21
    Jhow21 Kn03

    Posted

    Sorry to read this. I have had and still have some signs and symptoms like this. Mine turned out to be due to benzos.
    • caroline70988
      caroline70988 Jhow21

      Posted

      OK but is that for depression? I’ve herd of them just asking if they don’t know issue why are the prescribing this ? I’m still on pregabuline and another been 3/12 years basically I been still waiting to go to nerology again think I have cidp some thing that u can get after gbs . I don’t know but it sounds like u have gbs but not a doctor many similarities of your diagnosis that you talk about that are similar to that disease if so they better start doing some thing about it . As your dr say can u please test me out for gbs , Lyme disease , so on .
    • caroline70988
      caroline70988 Jhow21

      Posted

      Wow but if they put u on it for what ever reason they should take u off them I’m gonna google it see what exactly they are . Just like how they wanted to give me few things I said know I want to get my diagnosis not taking pills that they don’t know what’s going on with you . Now you got more issues😞

    • caroline70988
      caroline70988

      Posted

      Sorry still half a sleep worried what’s gonna happen  just you might had reaction because of your diagnosis is not known so they are reacting to u because u don’t need them ask to put u on pregabuline do on . Poor you . Poor all of us just try stay calm I know it’s hard to do but there is many of us here that have many of same issue or close to it Hun . But ask your fr to check u for gbs. Ask to put u on pregabuline . 
  • caroline70988
    caroline70988 Kn03

    Posted

    Hellow Hun , 

    Every thing your dealing with I had but my got worse started 10 days started with my legs feet hands then became feeling very sick may I ask have you had any infections before getting any of this and if you did what was it ? Did u take any medications for it ? And have u had any flue shots or shots of any kind I’m surprise so exactly how long have u been like like this ? You said June ? Ok here it goes I never herd any thing about my disease till I got it but mine was for 10 days kept going In and out of emergency same doctor at emergency kept saying all In my head so on gave me pills for depression and axiety well I kept telling him over and over about tingling the feeling I felt in my body like some evil take over sad to say I got so sick every day for 57 days I’d call ambulance 2 times a day he kept pushing me away . He started yelling at me one point yep I’ll never for get ever . He didn’t do his job I would cry didn’t sleep for days when I did I was in and out was that bad then call another ambulance I had the worst case of gbs ( Gillian Barrie syndrome) there a few of us in here same most in here are amazing people that have gone through a lot . Last day I screamed my boy friend didn’t know what to do any more even my two sisters thought ok like maybe she’s going bonkers know I was not he did X-ray blood work no mri know ct scan only blood work yes I had iron track infection four months before this my dr gave me medication to get rid of it I had blood in my iron also went my doctor again told him I still feel like I have it 3 months he did iron test came out ok but I felt I still had it so yes when blood work ruin test came back only for iron track infection blood in iron . Well ambulance came my friend came from her apartment in hurry kept yelling please , please help me there some thing wrong ambulance came asked me question past out thank god I was by the couch ambulance people took me fast in this time I was in out of it and paralyzed from face to my toes no movements . I was in and out they admitted me still nerology was not knowing 7 days admitted still they didn’t know till finally as I was just about dead they were reading  priest came to do prayers finally 10 day they decided to give me spinal tab and they found out I had gbs . They should of never took that long to do one the head chief of staff and the dr all I hear is I’m sorry Mrs ..... we apologize for this that then my son cause as I said was mostly in a comma had to give right to put me on life support because it’s were the amun system eats the nervious system amun defficency . I was on life support as well as having plazma which is blood transfusion. Plazma was used to to do the reverse my breathing so on kidney bladder were Mel functioning . Was 6 month at one hospital and 7 months rehab Center came home was still paralyzed lots physio I have to push ur self exercise .  Had Psw for over two then they stopped my Psw I was still paralyzed I had to have my daughter my boy friend home with me for months had to get taught how to transfer my self on board to go on a chair to go bath room. I went gym worked out much as I could I 3 years 4 months I can walk but still can’t go long distance I get tired fast I feel like I have cipd still waiting for them call me nerology to see test me I still feel knumb half way up my leg paper feelings still bit tingling my hands feet yes I got depressed high axiety wouldn’t u ?  They should of caught it on time there cases less sever then cases like me which was so bad being hospital 1 year. Still suffering  so that what I think you might have not a doctor but it sure seems you gave it . Tell them u think it’s gbs If you feel ur getting worse go into emergency tell them u think it might be gbs god bless you . My story is way long but I feel for you , if you need to go in u go in also had to go on a catheder for months basically  had to learn to pee again.  Please let me know how you are your not alone . If you feel the need to private message me plz feel free to do so hugs 

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