Cidp

i have cidp , my 2 foot drops , i walk with a walker , i will try scells in spinal cord.i found out that my father had mct " mary charcot tooth "

all my big problem that i have 2 daughters " one is 7 y old and the other is 6 months . the 7 y old hove black dots in arms , reddy skin back ,in chest and abdomen.

how do i know that she has cidp , if she has do i begin treatment even if cidp is not active.

Hi. CMT and CIDP look very much alike. I would look into this CMT website to learn all you can. Some nerve damage from CMT may be preventable. It is very well studied and hopefully there will be a cure soon. In the meantime look at the list of drugs that are neurotoxic to people with CMT and avoid them. Many people who are affected go their whole lives without knowing because it can be very mild.

http://www.cmtausa.org/index.php?option=com_content&view=article&id=68&Itemid=180

Thanks, mdolich and mabes. If CMT is suspected, we have a community for that as well:

http://www.charcotmarietoothsupport.org/

I actually have both CMTX AND CIDP. it is extremely rare to have both but I know my diagnosis is accurate for two reasons. I receive medical care at the University of Iowa’s CMT clinic- it is the only one in the country that treats and does clinical trials for CMT only. I also have done monthly IVIG treatments for 13 years and it clearly affects my body. If it were only CMT, IVIG does nothing. I literally just got back from the CMT clinic. I drove with one of my children who also has CMT 997 miles each way to see Dr.Shy in Iowa. I can tell you from experience it is the best place to go. They were actually the ones that diagnosed me with CIDP in addition to the CMT. When I got sick at age 30, I went from being an active athlete and mother of 3 small children to needing leg braces and forearm crutches in less than 4 months. I sought the best medical care in the country for CMT. Dr. Shy’s clinic recognized with the speed and extreme aggressiveness of my symptoms that something else might be going on and tested me further to determine that I had both. My CIDP has been so aggressive that if Dr. Shy had not diagnosed it, I would have died within a year due to the CIDP. Even with IVIG, I have had exacerbations that within less than a day I was completely paralyzed on a vent to breath and only able to move my head. If I didn’t have the CIDP diagnosis then everyone would have been standing around trying to figure out what they could do. Because I knew I had to CIDP they did a five day dose of IVIG that gave me back alot. Most importantly it let me come off the vent and breathe independently There are multiple blood tests to determine if you have one of the CMT genes. There are different genes for different types of CMT.The test simply tell you if you have a CMT gene and which type of CMT, even if you’re not symptomatic. Knowing what type of CMY you have is very useful not just for you but concerning any children you might have. Different types of CMT are passed down differently through families. If you have CMTX, it is on the X gene and if a woman carries it she has a 50% chance to give the gene to any of her children. However, if a man test positive for the CMTX gene, he will give that gene to all of his daughters but none of his sons.I hope this information helps and I wish you well with the rest of your health care.

Thanks, Susan, your post is very helpful. I hope you are doing okay now.