Newly Diagnosed with GBS

    • December 27, 2017 at 2:38 pm

      My symptoms started with just some tingling in feet. It progressed to numbness and weakness in both legs up to my hips in about 2weeks. This was early November 2017.
      I was diagnosed with GBS November 21, 2017 and told I would need IVIG treatment.
      The insurance company has yet to authorize the IVIG treatment. It is pending preauthorization.
      My symptom have not gotten worse but not better either.
      My question is, would the IVIG treatment still be beneficial after so much time has passed?

    • GH
      December 27, 2017 at 10:44 pm

      If you are not recovering yet, you definitely should get some treatment, probably IvIg. Is it still only in your legs? Did you have a spinal fluid test to support the diagnosis?

    • December 30, 2017 at 1:01 am

      Three days ago my symptoms got worse. They didn’t move up my body, they were additional muscle weakness in my legs to the point I had to be hospitalized.
      I thought the desease had reached a plateau because there was no change in several weeks but in three days, I had muscle weakness to the point of not being able to walk. Is anyone familiar with this type of thing happening?
      I’m new to this so any help appreciated.

    • December 30, 2017 at 10:49 am

      Hi, I got GBS about 15 yrs ago. I think its a shame if your insurance company is holding this up. From what I understand the sooner they start it less damage occurs, quicker rehab fewer lingering effects. I think, in my case, it may have started with a sinus infection I was battling, was also under tremendous stress. I got the burning numb feeling in my toes of one foot, then the other, then it started up my legs. The pain in my back got so severe, I was crying in the shower. Morphine shots would only last a few minutes. I went to 3 hospitals in 2 days trying to get relief, by the time I made it to the 3rd, I could no longer speak, my eyes would not close, could not swallow, my tongue did not work, could not use my hands, my posture was nothing but a slouch. I could still walk, in a Frankensteinish way. They did tests and started me on IVIG. The IVIG in itself is kind of a risk. You have to be closely monitored the first time you get it. Things started turning the corner after that. Never quite made it back to 100%. My eyes water, especially when I eat. The right side of my face will droop and my speech is a little slurred when I get too tired. Can no longer whistle or smile. Hang in there, it mostly takes time to recover. I was back doing service work in about 4 months.

    • January 24, 2018 at 2:42 am

      Want to thank everyone for there responses to my questions.
      However I say this as calmly as humanly possible.
      I WAS MISDIAGNOSED WITH GBS. That was not my ailment.
      I have SDAVF which stands for Spinal Dural Arteriovenous Fistula (SDAVF).
      Had two surgeries on my spine to correct it now I have to learn how to walk again.
      All the time waiting for GBS treatment and the worthless treatment itself worsened my condition.
      Make sure your doctors are more thourough then mine was.

    • January 24, 2018 at 12:25 pm

      I am so sorry to hear this, Wayne. Unfortunately, it happens a lot the other way around as well – an unfortunate result of these being rare diseases I suspect. I wish you well, and hope you make a speedy recovery. And always, always keep looking for answers yourself, especially in rare cases. Often enough you soon become more of an expert on what is wrong with you, than any doctor you see.
      Take care.