2 years without a diagnosis

    • Anonymous
      January 2, 2007 at 12:51 pm

      I have a father in law 58 who was diagnosed 3 months ago with GBS. This diagnosis came after 2 years of frustrated attempts by doctors to find out what was affecting him. First the doctors thought he had a stroke, then lyme’s disease, then they called it a medical mystery. Even now, they are still not positive that it is GBS. We have one doctor that diagnosed GBS, and a month later he was finally given some of the treatment for GBS.
      The doctors have told us that since he has had no treatment for two years for GBS, there is only a small chance he will recover at all. Currently he is so weak that he can only move his arms a little bit. He has feeling everywhere, but little movement.
      I am looking for more information on what can be done. He is residing in New Jersey and living at home with in home nursing care. His wife is taking care of him, but near her wits end. He is depressed and believes he will be living the rest of his life in bed, being dependent on others.
      Please, I am looking for support groups near northern New Jersey, online resources, anything to find out more about what can be done to help my family.
      Thank You.

    • Anonymous
      January 2, 2007 at 1:53 pm

      Hi MaryJane, Sorry to hear about your Dad. He needs to get pt, meds for any pain(like neurontin) and his depression needs to be treated. Rest is the best, pt needs to be done everyday until he can do the movement on his own, then every other day, with exercises in between. it is very important not to do too much and to rest alot. Just because he didn’t get ivig or pp in early onset doesn’t mean he is going to be bed bound and dependant upon others for the rest of his life. there is always a chance for recovery. it may come fast or it may come slow, everyone is an individual when it comes to this syndrome and recovery. you can find a list of liaisons in the gbsfi section of this site or call the foundation or email them and they can give you the liaisons’ number and name for your dad’s area. Please keep a positive attitude around your Dad, it will improve his ability to recover, the more positive atmosphere around him the better. GBS is not a death sentence, many recover to normal and many recover to the point of being independant. Feel free to ask all the questions you have and to let off steam when you need to, we have been there and know how the family, caregivers and patients feel. Welcome to the Family. Take Care.

    • Anonymous
      January 2, 2007 at 9:17 pm

      Hello MJ,
      GBSFI has a liaison in northern New Jersey, name is David Cohen and he’s located in Roseland, phone number is 973-618-1178. These people are there to help you.

      Are you anywhere near Summit, New Jersey (Overlook Hospital)? I can give you the name of a great neurologist. Click on my name and send me an email or a private message if you want his name.

    • Anonymous
      January 2, 2007 at 11:40 pm

      Did this illness come on slowly, or was it a rapid onset initially like a typical case of GBS? The reason I am wondering is that it could be CIDP, or the chronic form of GBS. Are his protein levels elevated in a spinal tap or lumbar puncture? If he has CIDP, then the standard treatments like IVIG infusions, plasmaphersis treatments, or even steroids could help him. With CIDP it is never too late for treatments.

    • Anonymous
      January 3, 2007 at 5:56 pm

      Mary Jane,

      Tell your father-in-law not to dispair.

      If he has GBS or CIDP (the chronic variety of GBS) he can still have lots of recovery. This is a disease of Getting Better Slowly.

      It would probably do him a lot of good if he could talk to others who have had this, so he feels less alone, and can get answers to some of the questions he surely must have. If he can use the computer, we’d be glad to talk to him, and may of us are available to talk on the phone with him too.

      If you haven’t contacted GBSFI through the home page of this website, please do so, and request a Patient Guide and a Doctor’s Guide. It will give you, your FIL, his other family members, friends, and doctors more information about the disease.

      A positive attitude is important in healing from any illness or injury. Most GBS patients take anti-depressants or anti – anxiety meds to help with pain, but also to help with depression.

      Best wishes,


    • Anonymous
      January 7, 2007 at 9:40 pm

      Dear Mary Jane,

      The only thing more devastating about being diagnosed after such a long period of time is feeling that the doctors don’t have a solid plan of action or enough actual experience. I live in Somerset County, New Jersey. I was diagnosed in October 05. The neurologist assigned to me was waiting to see if I would get better without treatment until another doctor told him to either move me to ICU and start treatment or prepare to put me on a ventilator. In the interim, a lot of damage had time to progress in addition to a relapse 6 weeks later. During that time, I stumbled upon some very good neurologists at Robert Wood Johnson Hospital in New Brunswick. I saw Dr. Jerry Belsh, Dr. Li was also recommended from RWJ. Fortunatley, even though I couldn’t get an appt with them for a couple of months, they did email me the dosage of IViG that I should have, during my relapse, based on body weight – my current neuro, at that time, was underestimating the dosage by 50% and admitted that she was just guessing based on MS patients.

      What I am really trying to get at is that it is crucial for you and your family to oversee what the doctors are doing and how much medication and what they are using. Especially to ensure that he is given a full term dosage of IViG.

      As some of the other members have said, it is important that he is also given pain meds to keep him comfortable and his spirits up.

      It does take some time to start to see an improvement after treatment, and since he has probably had limited mobility for two years, his muscles must be weak and in need of therapy at a conservative rate.

      Your mother-in-law could also benefit to hear that what she has been going through doesn’t mean it will always be this way and she too is in good company with our loved ones who help do those things for us that we so easily used to do for ourselves.

      Recovery also has its ups and plateau’s, and if he feels that he has not seen much improvement after treatment, doesn’t mean that is as good as he will ever get.

      If he would like to talk via email or telephone, just let me know – none of you have to go through this alone.

      email: [email]evermore@patmedia.net[/email]


    • Anonymous
      January 8, 2007 at 1:32 am

      My father-in-law had a rapid onset, where in a matter of hours he was basically paralyzed with a rapid decline to the lowest point of being on a ventilator. I do not know his protein levels, I need to find this out.

    • Anonymous
      January 8, 2007 at 1:33 am

      Thank you all for your support, and I did order some resources from the website so I could read more. MaryJane