MNGIE neuropathy

I feel bad that no one has responded! But I don’t remember anyone ever talking about that specific variant. I hope someone will come along to help! I read your other post, it was very long and involved, I am going to try to go back to it later and see if there is anything that I can offer with our mistakes and experiences if it is something that you asked about.

I hope you are o.k.. I am looking for a list of diseases that look like CIDP that I have come across. I will let you know as soon as I find it. I looked into mngie but it doesn’t sound like CIDP. CIDP can be triggered by many things but no one knows for sure what or why. Do you have a medical center like Mayo Clinic which is in the States? This is best place where a team of doctors consult with eachother to diagnose complex problems. For example you may need a neurologist to speak with an immunologist and a gastrologist to figure out what is happening. See if you can find a place that will make a case study. I will let you know about the list as soon as I find it.
Susan

Hi,
Instead of the list I think these resources are better to provide you all the info for questions you may have.
National Institute of Health ORDR (Office of Rare Disease Research) Links to NORD (National Organization for Rare Disorder) and also links to GARD (Genetic and Rare Disorder) Within these sites you can email questions and get answers as well as abstracts and complete texts. I hope this helps.
Susan