Newly diagnosed- Ivig expectations?

This topic contains 5 replies, has 3 voices, and was last updated by  Jill Mitchell 1 week, 2 days ago.

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  • #116191

    Sandy Foukarakis
    Participant

    My symptoms began Dec 7 but after negative spinal tap that day, was misdiagnosed until Thursday Dec 13 and started ivig the next day. I was discharged home yesterday with PT and follow up with neuro 12/31. I am fortunate it is only affecting lower extremities but would love to hear from others when they noticed benefit after ivig. I still can’t move my feet and my legs are very week. I’m a spine & sports medicine Physician Assistant and I think my medical background is working against me right now so am hoping to hear from others who have experienced the same. I went from being a triathlete and working out daily to using a walker (I’m 42 and previously in great health) so am pretty frustrated and would love to hear of others recoveries and timelines.
    Thanks

    #116192

    Michelle Daniels
    Participant

    Sandy – I was diagnosed with GBS 14 months ago after getting my first ever flu shot. I had 5 days of IVIG which stopped the progression of the nerve damage. Everyone recovers at a different rate but for me, I am still recovering. After 14 months I still have numb/tingly feet, legs and fingers. It’s VERY frustrating! Fatigue is what the biggest frustration is – you have no control over it and can just work out and make it better. It’s about learning to live a different way (allocating your energy). I too was very active until GBS… and now it’s a struggle to do yard work. Dr’s may have told you that you will “fully” recover in 6months to a year, and I hope that is true for you – but if it’s not…. hang in there, take it day by day, have a good support system, don’t push yourself to hard or you will take several steps back in recovery (I learned the hard way…several times in-fact). GBS is so rare that you may have a hard time finding a DR or Neuro Dr that really understands what you are going through so be diligent with them if they try to poo poo how you are feeling or experiencing. Best Wishes… reach out if you have questions.

    #116193

    Sandy Foukarakis
    Participant

    Michelle, thank you so much for your reply. If I’m frustrated after only 2 weeks, I can’t imagine the frustration you must feel after 14 months. The irony is that the second I felt the paresthesias move up, I immediately thought ‘guillian barre’ since I was 3 weeks past my hospital-mandated flu vaccine. That’s why I got the second opinion when the first neuro couldn’t find a cause and said not GBs with negative tap. I’ve since learned that’s not all the uncommon early on. We learn about GBS in school but are told it’s so rare, we’ll never see it. I have worked emergency med and spine and sports med for years but have only seen it once. Well, twice now…
    Thank you so much for sharing you’re experience and I wish you well and continued recovery.
    I do have a more personal question- having been very active prior, how do you handle the pity? I’m constantly reassuring family, friends and coworkers that’s it temporary, reversible, it will improve… but it’s driving me crazy when I’m not feeling that great about it to start. I’m doing my PT at my own practice since I trust my therapists whole heartedly but don’t even know how to react when people cry (literally) when they see how I ‘walk’. I’d appreciate any and all advice and if you’d prefer (and it’s allowed?) I can give you my email. Thanks again

    #116195

    Michelle Daniels
    Participant

    I also had a negative spinal tap but THANKFULLY, the Nero on call that night at the hospital knew about GBS and she started treating me right away. 2 in 1 million people get GBS from the flu vaccine… now why can’t I “win” those odds playing the lottery!!! Try to enjoy your holidays, take care.

    #116196

    Sandy Foukarakis
    Participant

    I have said the same thing about the lottery time and again the last week. The first neuro told me was vit B deficiency since primarily I was mostly sensory. Didn’t make sense since my b12 was above normal. Next day when I lost reflexes and motor, I knew I needed second opinion but was still being worked up for tick borne since it’s so common where I live. only thanks to my work connections, I was able to get second opinion rapidly and this guy knew and understood GBS. Scary what could have happened if I accepted ‘vit b12 deficiency’ for a diagnosis.

    #116224

    Jill Mitchell
    Participant

    I hate to hear what everyone is going through. Although it makes me feel like I’m not crazy
    .. Diagnosed 12/1. Still major lumbar pain and vision head issues. I was told it would peak at 4 weeks. So hoping not misdiagnoses and its MS. EMG scheduled. Mine did affect heart rate and blood pressure. Any insight appreciated. I didn’t get flu shot this year,thinking slight mastro issue. It was less than 12 hours

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