CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Thank you, @sunnyflower, for a good perspective on the blessing of pain and suffering.

Jim

@sunnyflower
So very true Sunny. Very right on! The deep blessings that accompany pain are that your focus is forced to move away from the temporal things in life to the eternal. That is the only true source of nourishment that exists, it's just not something easily understood until the focus is shifted. I am inspired by God through the details of the lives of all of my friends here on Connect.

Blessings to you Sunny! Hank

A gentle reminder that the topic of this discussion is CIDP (chronic inflammatory demylinating polyneuropathy).

For many people faith is integral to health and healing; for others this may not be the case.

Members wishing to continue the conversation about faith and healing, I invite you to participate in one or all of these discussions:
– How Spirituality Can Help Stress https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/
– Spirituality, religion and getting through life's challenges https://connect.mayoclinic.org/discussion/what-do-you-rely-on-to-get-you-through-lifes-challenges-spirituality-or-religion-or-what-else/
- Cultivating spirituality https://connect.mayoclinic.org/page/take-charge-healthy-aging/newsfeed-post/cultivating-spirituality/

Hi again @txsmo sorry this conversation got side tracked.

In reading a little more about CIDP, it sounds similar to MS only the occurrence is in the peripheral nerves instead of in the brain itself. I know when I was experiencing MS symptoms after being diagnosed I never had any pain associated with it, just reduced motor function, mostly in the legs. So all of your pain might be coming from the neuropathy or at least not the CIDP, do you concur? And the fact that you did get steroids at some point might have helped produce the recovery from your paralysis. The reason I say that is simply from my own experience of having my MS symptoms subside after steroid infusions. Sorry you can't continue with steroids as they might have been able to help you further, or so I suspect.

I find it interesting that you joined Connect in Nov/'18 but only posted for the first time a few days ago. Wondering whether you have been following the forum over that time or just came back to it after a while of not paying any attention to it?

Best, Hank

@sunnyflower @jesfactsmon and anyone else, please join me in The Chat Room, a discussion about this and that https://connect.mayoclinic.org/discussion/the-chat-room-a-place-to-talk-about-this-and-that/

Hello Hank and Colleen, I find it impossible to separate God from anything in my life. I know I'm famous for wrighting novels so I will try to be mindful of that. I do want to point out that there have been a lot of responses to the subject in light of our day to day coping w/ these health issues. Have there been any actual complaints? I've only received a lot of feedback from blog memeber saying they have found inspiration in this subject. Oh dear, what to do? When one posts something on a different discussion, do all the blog members see it or do they have to go to that discussion to see it there? I should know the answer to this and I think I do but am still learning and somewhat confused. Thanks for your support and patience, Sunny

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.

@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

@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?

In 2008, I started with episodes of feeling like passing out. Then symptoms went away. Month later had tingling in both hands very sensitive to cold weather. Made it worse. Then went away. Couple Months later had hands and both feet tingling. Symptoms lasted longer this time. They thought I had MS and ran all kinds of tests but no lesions. Symptoms went way. Couple months later had the tingling and now numbness in all extremities. That eventually went way. My doctor not neurologist just brushed it off. So I did too. My next symptoms were tremors and then balance issues, then memory issues, then falling 5,6,7 + times in a week. Then I couldn’t get off the couch or up off the floor. This went on for years. He never referred me to a neurologist. So I finally set it up myself. I told them I needed an appt to rule out MS. Told my Dr and he sent the referral for me. The first neurologist I went to, walked in, never ran any test, didn’t check my reflexes, did nothing! Stood there, said “ you don’t have MS, it’s just neuropathy” and left the room. I’m continuing to get worse. I just let it go as I didn’t know what to do. In October 2017 my sister died of MS and I have a major exacerbation of my symptoms and now have not gone away. My PCP ordered an EMG. Everyone warned me how pain full it is. This Dr starts doing the EMG and instantly stayed “something is wrong” as she tested my hand and nothing happened. Moved to my elbow, same thing nothing. Moved to other arm and legs, Nothing. I had no reflexes. I could not feel any of the testing either.
I went to a second Neurologist was able to get in to the BEST in my town. He immediately checked my spinal fluid which the protein was 317. He did more testing. Said not MS but said I have a dual diagnosis of CMT and CIDP. But this time I started having the breathing issues and being rushed to hospital thinking I was having a stroke. But it wasn’t. Just more rare symptoms of my illness. Got started on my IVIG treatments 2 days every month. At first didn’t notice anything. And I continued to have my breathing episodes. That’s when I went to the Mayo Clinic there at Rochester. And the rest is in previous message.
I am doing much better. Haven’t had a breathing episode in months. My pain is tolerable. I refuse to take narcotics as I know one day I might need them. CBD lotion is very helpful. And since I am now getting my IVIGs every 2 weeks, I am feeling better than I did but only hold me for one week. Then I’m so fatigued, tremors, balance and pain get so bad. I walk with a cane when at work and alone in public. All in All I feel the IVIGs are helping me as I’m still walking. When I was only getting them the every 4 weeks I got to where I could barely walk by end of day and couldn’t get off the couch. I’m not that severe anymore. The fatigue, pain, and balance are what gets bad before my treatments are due. My other symptoms are All still there but not getting worse thank goodness.