family ties

    • Anonymous
      March 7, 2008 at 1:08 am

      My neuro told me that it’s very unusual to have a brother and sister both with CIDP. Are there any others here that have CIDP and also have a close relative with CIDP?

      Could this be a horribly rare coincidence or could there be any genetics at play here?

      My sister was diagnosed with it about 6 years ago, and mine was diagnosed (a late diagnosis due to an insurance snafu) in July of 2006. We both go to the same neurology practice (and the same infusion place) but we have different doctors.

    • Dawn Kevies mom
      March 7, 2008 at 8:39 am

      In my opinion, the explanation docs give is kind of contradictory. Autoimmune issues are themselves hereditary. That is, if you have allergies, you or others in your family probably do because of a genetic predisposition. So, once there are autoimmune issues, they probably run in the family and you can get others at any time. The way your immune system descriminates against self cells and non self cells is a little hay wire. One illness is not more likeley to occur than another, but any in the long list are possible. So technically, others w/in a family could get gbs. It is a statistical thing I think. Rhinitis lets say is pretty common, so it is more likeley that many w/in the family would have that predisposition. GBS by nature is rare, so the possibility of it popping up in the same family statistically would be a long shot. I guess you guys just hit the longshot.

      Try under the search topic, this has been discussed before and I am sure it has been explained better than I have explained it. Good luck to you and your family and I wish you a good recovery.
      Dawn Kevies mom

    • Anonymous
      March 7, 2008 at 11:06 am

      Thanks for that and i will search to find the thread(s) you’re talking about. Thanks to IvIG sister and i are both getting better, though i still am having trouble coming to the realization that i won’t ever get to the condition i was in before CIDP. CIDP triggered a depression in me the likes of which i have never felt before, but I’ll leave it at that because this is not the place for a pity party, this is supposed to be a positive and uplifting place. I’m glad I found this wonderful resource.

      Thanks again.

    • Anonymous
      March 8, 2008 at 4:53 pm

      WE are glad you found us also. However, it is also the place to vent and have a pity party. We all have done that and will do in the future. It is a safe way to truly express what you are feeling and all of us have and are in the same place.
      CIDP, Nov 2007

    • Anonymous
      March 8, 2008 at 9:39 pm

      Thanks for that Beth!

    • Dawn Kevies mom
      March 9, 2008 at 12:02 am

      I do not even have cidp or gbs, my 11y/o does and I come here for a pitty party lots of times. Amazingly, no one has gotten sick of me yet, they all just get kinder and kinder every time. In a weird way, someone elses pitty party helps me when I get the chance to respond and help them (hopefully) So… by all means pitty away, we are here to listen.
      Dawn Kevies mom

    • Anonymous
      March 9, 2008 at 10:47 am

      Bill you never with autoimmune disease what could happen. I lost to brothers in there teenage years to Pulmonary Fibrosis and the DR said it isn’t hereditary that what he said when my first brother was diagnosed. He was the 2nd child and the other brother was the 6th child. One died in 1976 the other in 1987. I got one brother alive who wonders if he will develop it as he has breathing problem that they say is not Pulmonary Fibrosis yet but they don’t know yet what his problem is and they would have to wait till he gets worse before maybe finding what is causing his breathing problems.

      Maybe you and your sister both ate some bad chicken or something. Maybe you were both exposed the same thing to cause your CIDP.

      Wishing you the best.
      I also have depression which got worse with the CIDP. Being treated for that now. So go get help for it you won’t regret it.

      Sue

    • Anonymous
      March 11, 2008 at 7:31 am

      I never realized pulmonary fibrosis was autoimmune ? Interesting. That’s what they said was one of the things my mom had-including the lung cancer.

      At her memorial service, I saw my uncle that I hadnt seen in years. He’s my dads brother. I noticed he walked kinda like me but worse and learned that he has a type of neuropathy, too.

      Genetic or not…I dont know. Either way…it’s the pits.

      good luck.

      Stacey