• Anonymous
      May 17, 2013 at 7:32 pm

      Hi All. My 69 year old mom has been recently diagnosed with this illness. Not sure yet if its GBS or CIPD but she started getting the tingling feeling last December and started getting worse. They treated her with the IVIG for 5 days straight and started improving in January but worsen after stopping the treatment. They started her treatment again for 1 a week for 5 weeks and that helped for a bit and worsened again. This week she was taken to the hospital because she contracted pneumonia. The doctor said it might be food or liquid going to her lungs because she is having problems swallowing. 2 days ago she stopped breathing and is now in the ICU with a ventilator. She is in pain and she is completely paralyzed. We can only communicate with her through her eyes and takes about 10 mins to figure out one sentence. Please let me know if there is hope for her recovering from this.

      Thank you,


    • Anonymous
      May 17, 2013 at 10:14 pm

      We’ve just heard from doctor that it’s GBS. He said they will need to do a tracheostomy on my mother because she is in total paralysis. She’s only been on the ventilator for a few days not sure if this is a common practice. Also, if she can’t swallow food yet is there going to be a second hole?



    • GH
      May 18, 2013 at 1:17 am

      A need for a ventilator and a tracheostomy is not unusual in the most serious cases of GBS, which this is. The good news is that there is definitely hope for recovery from even extreme cases of GBS. It is much too early to say how complete a recovery she will make, but she will certainly make some. Recovery will take a long time, however, up to a few years. I did not require a ventilator or tracheostomy, but was paralysed below the neck for a few weeks. Today, two years later, I walk without assistive devices.

      I suggest you get a copy of “GBS — from diagnosis to recovery” by Parry and Steinberg. It explains much of what you need to know.

    • Anonymous
      May 22, 2013 at 8:12 pm

      Thanks for your reply. My mom will be getting the tracheostomy today or tomorrow. The doctor switched her treatment from IVIG to plasmapheresis. They are unsure if this is CIDP or GBS and it’s looking like a combination of both.

    • GH
      May 23, 2013 at 12:53 am

      I don’t think calling it a “combination of both” makes sense. It’s only a label, anyway, for a class of disorders. The particulars of the presentation can vary widely. Usually, CIDP does not require a ventilator. Steroids are not helpful with GBS but can be used to treat CIDP. It all comes down to what the particular presentation is and what treatment works.

      I am classified as CIDP but in some resprcts I am more similar to a case of GBS than to a typical (if there is such a thing) case of CIDP. I am atypical under either diagnosis.

      I had nine plasma exchange treatments in the hospital, after two rounds of IvIg failed to halt the progression. Typically, about five treatments are given, but in my layman’s opinion, the more the better. After the trouble of installing the catheter, you might as well make good use of it. With no way to prove it, I believe the high number of treatments was the key to my quick recovery.

    • Anonymous
      July 9, 2013 at 8:32 pm

      Thanks again GH for your time. It’s been over a month and my mom has been transferred to a rehab facility. She is breathing on her own now and have closed down the trach hole and they even have her scheduled to come on this Friday.

      Unfortunately, since Saturday, she started feeling weak again and she is feeling pins and needles on her hands and feet again… Is that normal? Is she just needing some rest from her physical therapy sessions? Or does this mean she has CIDP and not GBS and she needs more plasma exchange treatments regularly?