Newly diagnosed- Ivig expectations?

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.

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.

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

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.

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.

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.

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!

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?

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?