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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
Autoimmune Diseases | Last Active: 2 hours ago | Replies (263)Comment receiving replies
I am new to this site- I was officially dx with Igm-CIDP/MGUS July 2019 by Mayo Clinic Rochester. I was first dx with CMT/CIDP after starting symptoms in 2008 from my personal neurologist in October 2018. I started IVIGs in November 2018 2 days every 4 weeks. After visiting the Mayo Clinic their recommendation was to continue the IVIG treatments and add Rituxan once every 6 months after the starting dose. My second dose of Rituxan was August 2020 and I now have my IVIG treatments every 2 weeks because they are not holding me. 2 weeks ago I started not feeling right, went to emergency room and was dx with a mediastinal mass in the Anterior part of my chest. This apparently is a rare mass and location that the thoracic-cardia surgeon wants to present my case a board of physicians before making a decision to either biopsy it vs removing it then biopsy it.
With all the reading I have done on CIDP. I read that CIDP has association with several types of cancer, especially hematologic malignancies.
Has anyone ever been diagnosed with cancer that has CIDP.
Replies to "I am new to this site- I was officially dx with Igm-CIDP/MGUS July 2019 by Mayo..."
@jtbt0406, I would like to add my welcome to Connect along with Hank @jesfactsmon and other members. Hoping some other members with CIDP can share their experience and information they may have related to cancers associated with CIDP. I'm assuming you probably have already read these articles.
- Chronic inflammatory demyelinating polyneuropathy and malignancy: A systematic review: https://pubmed.ncbi.nlm.nih.gov/29194677/
- Combined Hepatocholangiocarcinoma Associated with Humoral Hypercalcemia of Malignancy and Chronic Inflammatory Demyelinating Polyneuropathy: https://www.hindawi.com/journals/crionm/2019/3418950/
- CIDP associated with lung cancer: a paraneoplastic disease?: https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1085-9489.2004.009209m.x
- Chronic Inflammatory Demyelination Polyneuropathy (CIDP) Associated with Colorectal Cancer: https://journals.lww.com/ajg/Fulltext/2018/10001/Chronic_Inflammatory_Demyelination_Polyneuropathy.1547.aspx
@anotherfinemass may have some information that he is able to share about a mediastinal mass. He also started a discussion that might be helpful - Thymic Tumors: https://connect.mayoclinic.org/discussion/thymic-tumors/
Do you have concerns with your surgeon's plan to discuss doing a biopsy before or after removing the mediastinal mass?
My husband had a blood test called Paraneoplastic syndrome. One antibody called Voltage Gated Potassium Channel, sometimes means there is a tumor or malignancy. His scans and labs have not showed any evidence of malignancy thank God. Perhaps see if they can run that panel?
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@jtbt0406
Hello, welcome to Connect. You can find any discussions in which CIDP is mentioned by putting CIDP into the search window above (little magnifying glass). My own understanding of CIDP is minimal. I have read that it affects (damages) the myelin sheath of peripheral nerves, similar to MS (which I have) inside the brain. I have not heard of a connection between MS and cancer. Not sure if that is true of CIDP as well. What were your initial symptoms back in 2008? What are your initial symptoms when the IVIG starts to wear off? Just curious as to where it affects you. Very sorry about this mass that has developed. If it's inside your chest, removing it sounds like major surgery no? If it's cancer and they suggest chemo, know that developing neuropathy is very possible from doing it. Consider doing Healan951 instead. There is info online or I can point you to a lot of very good articles about it. It's not some crackpot alternative. Just FYI.
Best, Hank