AnonymousJanuary 8, 2010 at 5:52 pm
Hi my name is Steven and I am new to the board! I had GBS back in the summer of 2005 and made a full recovery…..at least my nerves did. So heres my problem. Ever since I had GBS I have been very sick. When I say sick, I don’t mean the residual fatigue or peripheral nerve systems that persist after GBS, I mean sick as in feeling like I constantly have the flu, bad.
It started when I was towards the end of my recovery which was about 5 months after my diagnosis. I started to notice that I was feeling tired a lot and getting strange headaches. At my last appointment with the Neurologist that over saw my care in the hospital(which was December of 2005), she noticed that my lymph nodes on my neck had swelled significantly, but felt that it could be nothing aslong as they went back to normal. In 2006 I went back to college and the symptoms began to progress. The heachaches became more intense and I started to feel dizzy and lightheaded all the time. I started to get aches and pains as if I have the flu and the fatigue turned into a fatigue that you get when you have an infection or a viral illness. The lymph nodes did not go down and have actually grown a little more and have become tender. So overall the feeling is like im constantly fighting an infection and it has been going on since I had GBS. I know it is not my nerves as I have had exams and the Neurologist that over saw my care was sure it wasn’t any residual and I am also confident that I don’t have any residual nerve damage and these symptoms are not consistant with the residual symptoms I always hear about.
My concern is that the problem may be in the immune system because as we know, GBS at its heart is an Immune Dysfunctional disease. Studies I have come across have shown immune abnormalities during teh course of GBS such as low NK cell function, but showed to be restored after the treatment with IVIG. The problem is that I never received any treatment because I was diagnosed too late and the damage to my nerves was already done. I am also aware that the hospital where I was admitted used someof my blood samples to look for infections for research purposes. My guess is that one of three things is happening:
1. I am still fighting teh infection that triggered the GBS.
2. I have some rare immune complication of GBS or something to that extent.
3. I picked up something else while I was weak from teh GBS and just have been unable to fight it off completely.
Does anyone have any info at all? Studies? Similar experience? Solution? I would really appreciate it. I have been very sick and continue to get worse and it has been 4 years since GBS so needless to say, I am ready to feel good again. I do plan on contacting the Neurologist that took care of me before when I had GBS so we’ll see. Thank you everyone and for those out there dealing with GBS or any residual symptoms, keep going and take care of yourself, your body CAN recover.
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