angels abound

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  • angels abound
    August 3, 2019 at 11:33 am

    I would recommend getting IVIG if your feeling worse as long as you can get it(they will cut you off depending on your insurance) and it seems to help. I had IVIG off and on for almost 18 months. I stopped because although initially it seemed to help me after several months it didn’t seem to be doing anything. Because I am not one to take any medication, my neurologist said I could stop IVIG but we wouldn’t know what would happen! If I got worse I could begin again. That was more than a year ago. I was diagnosed with many different autoimmune diseases amongst which was Guillane -Barre and I still have so many issues Most of the time I am able to manage my symptoms but I would definitely get IVIG again if I spiral down. Good luck and may peace be with you!

    angels abound
    February 21, 2017 at 8:45 am

    I can relate to what you are feeling regarding loss of hope. However our friend Jim Is absolutely correct in stating you are still in the early stages and have a chance of a full recovery! I was diagnosed with GBS in December of 2014. Unfortunately, I had been sick since September of 2014. Because of the delay in my treatment, my neurologist has told me I may never regain the distal nerve damage that occurred due to lack of initial IVIG treatments. This disease has taken away everything that is important to me. I have been a seamstress for 30 years but my hands no longer work for me. I was always outside walking or riding my bike but no longer. Every day I hope I will feel more energy ,less pain and depression. I take comfort in the many angels around me, the fact that I am no longer in a wheelchair and most days are tolerable. Please keep on hoping and find comfort in those around you. I have recently gone Vegan and it has helped my inflammation. My sister is an acupuncturist and Chinese herbalist. She believes there is a root cause to any illness so we are still trying to figure out what mine is and fix it! Never stop trying!

    angels abound
    September 12, 2015 at 9:50 am

    Wow, you’ve described all the things I’ve been going through! Although I’m not qualified to answer any of your questions I can say I don’t think there is any one pattern in this “syndrome” whether it is GBS or CIPD. My treatment was delayed as well (they originally back in Sept.2014 found a herniated disc in my neck and I now have a titanium brace in my neck) so I was not treated with IVIG until December 2014. I am now getting IVIG in home every six weeks. Because of the delay my neurologist says my recovery will take much longer, up to 3 years. I would suggest you make sure you have enough b vitamins, magnesium and vitamin d in your system as these are very important for nerve health. I took a walk on the beach yesterday and every day I feel good I try and push myself a bit. I am grateful for this forum which allows me to connect with all of you. Good Luck1

    angels abound
    September 7, 2015 at 12:14 pm

    Dear Mike, I just wanted to say since I’ve been ill {September 2014} I have had so many different diagnosis, so many *good” days and “bad” days that my only advice is not to ignore anything, ask a lot of questions and if you aren’t well enough yourself, find an advocate to help you navigate the doctors and insurance companies! My neurologist tells me my recovery will take up to three years if in fact I recover fully. I receive IVIG every sixth week and have been very slowly getting stronger. Having been a very active person this is a tough pill to swallow! I get up every day not knowing what it will bring but I take a deep breath, count my blessings and open my eyes. Good Luck

    angels abound
    August 28, 2015 at 5:47 pm

    It is common to continue with IVIG. My doctor ordered me to have them every 4 weeks for a year. I have been having bad reactions so I persuaded him to make them every 6 weeks. I just had my first every 6th week recently and didn’t have as bad a reaction. I was told that you can react differently every time because you are getting other peoples plasma and its always different! My case is strange at best. I’ve been diagnosed with several things and recently found out my doctor isn’t “committing” to a diagnosis but he originally started me on IVIG in the hospital last December and I have been getting better VERY slowly. Hope this helps. Take care.