Michelle Daniels
Your Replies
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March 8, 2019 at 11:34 am
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?February 22, 2019 at 11:27 amSandy, 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.
February 9, 2019 at 8:49 pmPaul, 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.
December 19, 2018 at 6:33 pmI 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.
December 19, 2018 at 6:27 pmI have had GBS for 14 months and I was told I would be fully recovered in 1 year…not true. I do not have CIPD… my symptoms are the fallout from GBS and all the nerve damage done at the beginning. I agree BlessedMOM, most Dr’s are not educated enough to know! My primary care Dr that I saw after being released from the hospital treated me as if I had just had the flu…. it’s the last time I ever went to see him. I don’t have sweating issues (other than mature lady flashes) but do have the other issues you have mentioned. Fatigue, pain (especially with physical activity), numbness and tingling. GBS stinks!
December 19, 2018 at 6:08 pmSandy – 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.
