Newly diagnosed- Ivig expectations?

This topic contains 14 replies, has 7 voices, and was last updated by  Fred Martin 2 months, 1 week 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

    #116272

    Paul Knowles
    Participant

    Hi i was diagnosed in May 2017 , it started in my feet and went up my leg, then it went right through my whole body, thank god it didn’t go to my lungs. I still could not tell you how i contracted GBS.I went to the ER in Portsmouth NH they thought i had a pinched nerve in my back, so i went to a back specialist he said it wasnt that and sent me home…I got home it started to go up my legs it got worse and worse as the day went on, so i figures id go to bed and be better the next morning, i woke up in the middle of the night to go to the bathroom i stood up and fell flat on my face i had to feelings in my legs they wouldn’t move, so i yelled to my brother who was living with me at the time he came in and picked me up and sat me in the living room, i tried to stand up and couldn’t we called the ambulance they brought me back to Portsmouth NH hospital this time they done a spinal tap and figured out that i had gbs.So they admitted me i had 5 ivig’s i felt a little better so they send me to rehab i was doing pretty good for a few days then all of a sudden i had a relapse so they sent me back to Portsmouth Hospital, they couldn’t do any more with me so they sent me off to Mass General Hospital in Boston Mass, i had a team of neurologist who start ivig again, they check on my every morning i was they for over 2 weeks till i was strong enough to go back to rehab, was there for 10 days then they sent me home with home pt, i am still be treated with ivig once a month….Its a terrible disease i was so scared, i still get tingling, numbness they say it will go away in time i am now almost 2 years into this and still being treated….Thank you For listening Paul Knowles Seabrook NH…

    #116274

    Michelle Daniels
    Participant

    Paul, Thanks for sharing….I too was diagnosed in fall of 2017. I have not had ongoing IVIG treatment. I have tingling and numbness 24/7 that increases with physical activity. It sucks!! I was also told it would go away by now, but it hasn’t. My Neuro Dr keeps trying to give me different drugs to see if it will help but nothing did and I am tired of being a test subject so I just say no these days. Yes, it is a terrible disease that Dr’s know little about (in my experience). Hang in there friend and know you are not alone.

    #116300

    NateMulliken
    Participant

    I was hit pretty hard in 2010, it took about 9 years of hard work to get back to a point where I am not noticing effects every minute. The tingling was maddening, the numbness was also tough, weak, agitated, tired all of that. It was really bad. After 5 years I had pretty much given up on feeling remotely ok. But for me at least it gradually got better. Here I am 9 years later proof that even if it takes forever it does get way better in some cases. As for me I am so glad to feel better that it really doesn’t matter how long it took, I am just glad today wasn’t torture and that is not meant to sound negative, makes me really appreciate today.

    #116301

    Michelle Daniels
    Participant

    Sandy, I am wondering how you are doing with your PT? I recently started going to the gym and working with resistance machines (slowly). I am trying to build my muscles back up. Working out is hit and miss depending on how I feel that day, what I did the day before, etc. It’s very frustrating because prior to GBS I could workout as I wanted.

    #116302

    Sandy Foukarakis
    Participant

    Hi Michelle,
    PT is going ok but i totally feel your frustrations. I’ve been doing PT about 2-3 hours a day 3 times a week and also turned a spare room into a gym for my home exercise program. I still have lots of issues with weakness and balance so my therapists have been pretty creative to help get me not get bored with my exercises. I’ve installed a ballet barre and TRX rings- both are great at giving me stability as I try to increase my strength and endurance but it’s sloooooowww going. Maybe try switching up your routine?

    I’ve also been getting ongoing IVIG treatments every 3 weeks and the week after seems to be a “good” time for me to make some gains since I have less pain & numbness then

    #116311

    John Moore
    Participant

    I’m 7 months since being diagnosed. I just finished 2 and a half months in sheperd center rehab and am now home. My main problem is feet and legs. IVIG did not stop the progression and had multiple plasma exchanges. I was on a ventilator for some time and feel pretty good about being able to do hat I can. I can tend to my personal needs but walking is tough. Staying positive is the only thing we can control and doing the most with what we have and what we get back. I hope you progress quickly since yours did not involve your whole body like mine. Like you I was completely healthy at the onset. Good luck!

    #116313

    Paul Knowles
    Participant

    Thank you Michelle im doing my best, i get depressed and get in my head…I have a couple great days not many symptoms then bang 2 bad days, tingling in my feet, feels like im drooling , alot of joint pain…I not on any meds except ivig once a month…I am glad i joined in with you guys talking about it helps…Thank you..

    #116315

    Michelle Daniels
    Participant

    Thanks Paul, I am thankful for this site as well. I do not personally know one other person who has GBS in my area so it’s hard to relate to anyone else about it. It drives me nuts that because I don’t have visible scares or injuries on the outside, people think I am all good and recovered. Ha, ha, they don’t see me on my “bad days” because I am on the sofa! I have good days too Paul and on those days I usually do to much which lands me on the sofa for a couple days. I get mad when that happens and you would think I would learn to regulate myself better but on the good days it feels good to be somewhat normal.
    Because I have been unable to return to work full time I am trying to get Social Security Disability which I found out takes almost forever! Has anyone else with GBS been successful getting SSDI?

    #116318

    Fred Martin
    Participant

    I got GBS while traveling in Spain; fell flat on my face one afternoon and went directly to a Spansh hospital. A neurologist was on duty and diagnosed GBS that very evening. ( I didn’t even know what GBS was and assume I would wake up the next day OK!) They started me on IVIG the very next day for 4 consecutive days. My arms and legs were paralyzed but I guess I was lucky since it did not affect my lungs. I was never in any pain.
    Other then the language barrier the Spanish doctors were great. (I returned to the states after two weeks) I didn’t start regaining any movement for for almost four months. I am now in my 17th month and I can walk using a walker. My hands are still a problem as is my lower legs and feet. I have no pain but tire easily. My neurologist uses one word, “patience”. My advice to you is don”t give up. I am 72, was very active, and if it wasn’t for family and friends I would have said good-bye a year ago. I’m starting another round of IVIG and hopefully I might see some additional improvements soon. What else can we do?

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