folow up question

    • Anonymous
      July 18, 2008 at 10:38 pm

      I was diagnosed with GBS in Feb 07, and had a mild case overall. At this point, facial paralysis is what remains. I actually never had the plasmapheresis or the IVIG treatment.

      My question is: Did anyone else “get better” without treatment? Does anyone know if there is a greater chance of re-lapse? Thanks for your help, and your comments are appreciated. I will have more questions to follow 🙂

    • Anonymous
      July 18, 2008 at 11:09 pm

      Welcome to our family. There are others who have recovered without treatment but there are also others that did not fair so well without treatment. As far as relapses and such, someone else will need to answer that question. I’m beginning to question a lot of the research and answers that we are given because just when I think we finally have a little bit figured out, someone goes and proves it wrong..lol. But feel free to ask and someone will respond.
      Glad you found our site.

    • Anonymous
      July 19, 2008 at 7:56 am

      Thanks Stormy! At the time, I could not understand how I would get better without treatment. Even now, I question it a bit with regards to a greater chance of things happening down the road. I know that no one knows what the future holds for anyone, but reading the posts make me ponder things even more. This board is very informative. Thanks

    • Anonymous
      July 19, 2008 at 9:48 am

      My understanding is that, for GBS, we all heal when our bodies stop making the bad crossreacting antibodies–antibodies that our body was trying to make react to the Camphylobacter gut infection or to whatever infection/vaccination/immune insult that precipitated this. These antibodies cross react with myelin on nerves and cause the GBS. When the infection is over, the body is not supposed to continue making antibodies against it and so there is no more also to cross-react and thus no more inflammation. In principle, what is happening is that our bodies are healing themselves and “treatment” is often not to stop the disease process (inflammation), but to stop the manifestations or nerves that do not work because of DAMAGE from the inflammation. I think this is true of some people with mild cases, but others build up enough damage that leads to continuing problems–not from the inflammatory disease per se, but because nerves are really slow to heal from damage and branch off to different places. Also, I think some people may have enough similarities in the myelin to the original “insult” that they continue to make antibodies now to this as long as myelin is being exposed by ongoing damage (then often becoming CIDPers). Also nerves do not heal perfectly–exactly as they were before and the nervous system is so complex that changes in wiring do not work well.

      I work with children with ITP (immune thrombocytopenia purpura) where antibodies attack the platelets (the cell parts of blood that stop a person from bleeding). With ITP, there is often a sudden onset of low platelets (because they get destroyed when antibody binds to them). Doctors tell the families that the people have to heal themself–stop making the bad antibody and treatment (immunoglobulin, etc) only alters the manifestations (low platelet count because of the destruction of the platelets). Do you understand–the treating immunoglobulin alters the destruction and not so much the presence of the bad antibodies. Many people think of mild GBS in the same way and I read lots of medical literature saying not to treat mild GBS (when people are still able to walk) because people think about it in the same way as other autoimmune diseases of rapid onset. In reality, there are probably significant differences. Platelets and their forming cells (megakaryocytes) pretty easily recover from a problem, but nerves are really slow and imprecise in recovery. This means that recovered nerves do not act the same way as undamaged nerves. Why lots of people “ought” to be treated in GBS is probably not so much to stop production of bad antibodies (since one time doses of high dose immunoglobulin may not be effective and plasmapheresis gets rid of the bad antibodies, but does not REDUCE production of auto-antibodies), but rather to reduce the damage caused from the process that causes problems at the time of acute inflammation and later when the nerves do not really work like the system was designed over years and decades to work.

      This is a complex concept and I probably have not said it very well, but there is a difference in stopping the inflammation and altering the damage from it. To get over the inflammatory disease, the ongoing production of the cause of the inflammation (the bad antibodies) have to stop being made. Immediate “treatment” in GBS is about limiting damage present and future resulting from the inflammatory process. I think this complexity and its interaction confuse most doctors and many immunologists. I also think that when people think about it better as two parts, maybe there will someday be a better way to stop damage in GBS and to limit ongoing damage in CIDP.

      I will try to say this once again differently. There are two problems in GBS. the fact that antibodies are made and cross-react to myelin; so the antibodies and inflammation. The second is the damage to the nerves from this inflammation that alters them (causes less effecient conduction of nerve impulses or causes the body to try to compensate for weakness in new and less effective ways or results in repair that is different than the system is used to having (like a patch to a circuit with different resistances so the current flows differently and the whole process no longer works as well as it was originally designed to do–and our design is completely awesome).

      The added complexity is that enough immunoglobulin (given to stop damage) also will have some impact on production (not plasmapheresis which really only affects damage) and also that inflammation causes secondard damage to the nerve that can cause further inflammation and makes a somewhat different self perpetuating cycle of damage in CIDP. To best help in GBS, it seems to me with my background in immunology research distant as it may be, is that we have to aggressively stop the damage and the cycle of inflammation (to prevent conversion to CIDP if possible). I think this is why doctors are beginning to question the “do not treat if it is mild” scenerio.

      WithHope for a cure of these diseases and a better understanding.

    • Anonymous
      July 20, 2008 at 11:34 am

      Hi,

      I never had any treatment, in fact, I was sent home and only midly told not to be alone. So of course, I was alone. Anyway, I’ve always wondered if I wouldn’t have so many residuals had I had any of those treatments. I am functioning in society – but deal with many mental issues which I believe GBS ecserbated (?sp – made it worse).

      I still do not have any reflexes. Just walk a little goofy.

      Take care and keep resting. I do lots better when I get around 9 hours sleep a night.

    • Anonymous
      July 20, 2008 at 2:38 pm

      Dr Cornblath (one of the foundations board members and a leading expert in peripheral neuropathy) was adamant that IVIG [B]DOES NOT[/B] stop attack in GBS, he made it clear that if IVIg is given, the patient can still progress to ‘bottom out’. Before I attended Dr. Cornblath’s leacture, I was under the erroneous impression, (and gave incorrect information in the past), that IVIg stopped the attack in GBS. It is correct that the doctors who are more knowledgeable with the syndrome are giving IVIg to those with ‘milder’ cases – which does seem to help during their recovery period. Dr Cornblath admited during the lecture that there is still so very many unknowns in these therapies and a lot is still a matter of ‘lets try and see’ in many cases, case in point, the fact that many docs are now giving IVIg again if the patient hasnt turned the corner 2 weeks after the initial dose – they think this may be beneficial. I know plasmaph. is different, but he did not get into that. – I had plasmaph. as IVIg was not available in the mid 80’s and I strongly believe that that was the turning point to my recovery.

    • July 20, 2008 at 4:47 pm

      I was a mild case…never became paralyzed or vented….and somehow managed to stay on my feet even if it was only at a shuffle pace. I had no treatment either. As of right now, I feel I have finally achieved 95% recovery and am quite happy with it. My 2 year anninversary is more or less today….went to the hospital because I got so bad and stayed in ER until the 21st when they finally admitted me. I look back and am very grateful for how far I have come. So it is possible to recover without treatment. It takes time and positive thinking and not giving in…taking care of yourself and resting.

    • Anonymous
      July 20, 2008 at 6:50 pm

      Thank you everyone who replied! I must say that I love to hear that others were not treated either; it makes me feel that I am not alone/only one who did not receive any 🙂 This board is so helpful, and a GREAT place to pose questions that others can truly answer because they understand! Thanks again!!!!! I can not wait until I can smile again, and feel like the old me

    • Anonymous
      July 20, 2008 at 8:52 pm

      This is my story.
      In 1986, when I was 8 years old, I had GBS. It was a very mild case. In hospital for a week, couldnt walk, had rehab and was back at school in 3 months time. All those years ago, they didnt have PP or IVIg to treat me. I had no residuals, grew up, had 2 babies,and 6 months after having the 2nd, I got GBS again. That was in January of this year. I had a severe case, total body paralysis, collapsed lungs, pnemonia, trach, respirator, the whole 9. I was in hospital until April, at which point, I went to live with my parents and receive IVIg. When I got to their house 3 months ago, I was still pretty paralyzed. Today, I can stand up and start taking steps holding on. I am getting IVIg once a month.
      Getting GBS twice is supposedly rare, but I guess luck isnt on my side!!

    • Anonymous
      July 20, 2008 at 8:59 pm

      This is my story.
      In 1986, when I was 8 years old, I had GBS. It was a very mild case. In hospital for a week, couldnt walk, had rehab and was back at school in 3 months time. All those years ago, they didnt have PP or IVIg to treat me. I had no residuals, grew up, had 2 babies,and 6 months after having the 2nd, I got GBS again. That was in January of this year. I had a severe case, total body paralysis, collapsed lungs, pnemonia, trach, respirator, the whole 9. I was in hospital until April, at which point, I went to live with my parents and receive IVIg. When I got to their house 3 months ago, I was still pretty paralyzed. Today, I can stand up and start taking steps holding on. I am getting IVIg once a month.
      Getting GBS twice is supposedly rare, but I guess luck isnt on my side!!

    • Anonymous
      July 22, 2008 at 10:08 pm

      Carolyn,

      Thanks for telling your story. I hope you regain your strength, and are up moving again. You are an inspiration, and I hope the best for you! Take care of yourself.