I have CIDP & now so does my aunt!

    • Anonymous
      July 17, 2012 at 2:22 am

      I am 60 years old, and have been treated for CIDP since 2003. Now my father’s sister, in her 80s, on the opposite side of the country and with no knowledge of either what exactly was wrong with me nor what it was called, has just recieved an identical diagnosis.

      I also have lupus, as does my daughter, 1 first cousin and 2 second cousins. But even though I’ve scoured the Internet, I can’t find evidence of anyone else with such a close relative — or any blood relative — both with CIDP.

      Further of curiosity to me, even though I have been on IVIG for years, have had a good experience with imuran and am going to try rituxin later this year, it was not even mentioned to my aunt that there was anything available to control and possibly slow down her rapidly deteriorating condition. She was given a prescription for neurontin. Period.

      Any explanations? Suggestions? Commiserations? Advice?

    • July 17, 2012 at 2:32 am

      possibly her age??? you mentioned 80’s. A lot of these treatments are harsh, maybe too much for someone her age. You didnt mention her current health other than the cidp, that may be a reason too.
      She could always ask her Dr why he is choosing not to treat her cidp and if she doesnt agree, find another Dr.

    • Anonymous
      July 17, 2012 at 2:52 am

      I have only just learned about this, and plan to show my aunt’s paperwork to my doctor in Los Angeles. Despite being 84, she is fairly healthy and (was) active until recently when she began having difficulty with balance.

    • GH
      July 17, 2012 at 3:12 am

      Treatment, unfortunately, can be influenced by the particulars of one’s insurance, as well as the particular doctors that one is seeing. Was she diagnosed by a neurologist or a general prqctitioner? If her condition is deteriorating rapidly, she needs to see a neurologist with experience in this area as soon as possible.

    • Anonymous
      July 17, 2012 at 3:42 am

      My aunt is on Medicare with military coverage for the remaining 20 and most prescription drugs. She was diagnosed by a neurologist who, while I doubt is a specialist was savvy enough to identify the symptoms.

      Does anyone else think the coincidence of two family members (one in CA, one in FL) having CIDP is pretty weird? I have never, other than when attending a medical seminar or chatting with folks on this forum, met another person with CIDP.

    • GH
      July 17, 2012 at 5:07 am

      I don’t think the coincidence has any significance. CIDP is considered to be acquired. There is no evidence that the susceptibility to it is inherited. Some cases will occur in closely related people solely by chance.

    • July 17, 2012 at 12:35 pm

      I have to disagree with GH…respectfully of course.

      I Googled “autoimmune disease inherited” and got a link to Johns Hopkins Medical Institutions Autoimmune Disease Research website. Here is the link: http://autoimmune.pathology.jhmi.edu/faqs.cfm

      This is what it has to say about autoimmune diseases being inherited:

      “Clinical and epidemiologic evidence as well as data from experimental animals demonstrate that a tendency to develop autoimmune disease is inherited. This tendency may be large or small depending on the disease but, in general, close relatives are more likely to develop the same or a related autoimmune disease. A number or genes have been implicated in causing autoimmune disease, primarily genes related to the human major histocompatibility complex called HLA.”

      Years ago I did research on this very subject because autoimmune diseases seem to be common in my family. My maternal Grandmother had diabetes, I have endometriosis, my cousin has epilepsy & my daughter has CIDP – all are autoimmune. After my daughter was dx’d with CIDP I found out an aunt of mine presented with similar symptoms. She did not have health insurance and the ER dx’d her with a peripheral neuropathy. The last time I spoke to her, 2 years ago, she still had not seen a dr for follow up & was not on any treatment but her symptoms sounded VERY much like either GBS or relapsing/remitting CIDP.

      Hopefully someone from Florida will see this post & they can refer your aunt to a neuro in FL that is familiar with CIDP. Years ago there was an older person (can’t remember their name) who posted about their mother, in her 80’s, getting IVIG. So it can be done.


    • GH
      July 17, 2012 at 4:42 pm

      I don’t disagree that there may be a genetic aspect to susceptibility to the disease. After all, the things considered to be triggers do not affect the great majority of people exposed to them. It’s complicated and is not fully understood. Thanks for the link. It looks interesting and I will look into it further.

    • GH
      July 17, 2012 at 7:12 pm

      Here’s a link to another report on the subject which more specifically pertains to GBS and CIDP:


      ” … in general, there is no clear genetic predisposition to these (GBS and CIDP) inflammatory disorders.

    • August 16, 2012 at 1:55 pm

      About CIDP treatment on patients over 80: I will be 81 next month and have been getting IVig off and on for three years. Right now we are taking a break because it was giving me terrible headaches. I am almost in remission; walk well, climb stairs and use my hands but my balance is poor and I have several odd symptoms. The problem with CIDP at my age is that it is hard to separate its symptoms from those of old age.

    • August 16, 2012 at 5:55 pm

      80 too old? I am 83 and will go in at 8:30am tomorrow for my monthly IVIG. No problems. I have never run across anything in my research of 18 years on IVIG that mentions “too old”.

    • Anonymous
      October 4, 2012 at 3:55 pm

      I have the same issue in my family. My aunt is only in her 60’s but presented with symptoms in her fifties. My daughter also shows early signs including identical episode of unexplained paralysis when she was a toddler just like I had.

      When I was treated at Mayo a few years ago they looked into these correlations and said that research will eventually join these links but for now – there are more environmental connections than genetic. They are keeping track of all of us – but so far the genetic markers for this is beyond what research has worked through. Especially on our side of the house where funding does not focus on a small population yet like CIDP. We did have a complete genetic workup on everyone through Mayo that also scanned through those genetic elements that have been documented and nothing was found on our case. The good news is that we have been documented and are being followed so that at least we can help contribute as they continue to make connections.

      It is interesting to see the differences and similarities in treatments. She is treated at UCLA and me at Mayo Rochester. Different philosophies for sure. I should note that my aunt and I grew in southern california and shared much of the same environmental history and I moved to the midwest a few years before I was diagnosed. My daughter was born in Wyoming and did not share in those same environmental profiles. Such as smog – parents who smoked – industrial pollution – building materials – etc. My daughter has a complete different profile.

      If I had more energy – I would love to research this all more!!