CIDP (chronic inflammatory demylinating polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?

@jtbt0406

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.

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@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?

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@jesfactsmon

@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

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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.

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@jtbt0406

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.

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Correction on what my sister died from. It was not MS it was MM. multiple myeloma after 9 year fight.

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@jtbt0406

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.

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@jtbt0406 A warm welcome to Connect! I am extremely heavy hearted to read of your painful (in many ways) journey. A doctor should have no problem referring a patient to a specialist. Shame on that doctor and the pain etc. that caused you!

You will find many here have had very similar experiences unfortunately. You will find sincere support, encouragement and inspiration here bc we care deeply about you and your well-being.

Hang in and know that I will be praying for relief for you.

Many blessings, Sunnyflower @jesfactsmon

Liked by Hank

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@jtbt0406

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.

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@jtbt0406
First let me just say how sorry I am that you lost your sister. Very sad.

What @sunnyflower says is right on. This is a good place to sanity check what is going on with your illness, for example back when your doctor was minimizing your symptoms, if you'd talked about it here you'd have most likely been advised to get a different opinion. Doctors, like plumbers or financial advisers or any field you name, run the gamut from really good to really BAD. And the result of going to a bad doctor can be consequential, only instead of having a water issue or losing money, your actual life can be on the line.

There should have been no reason you had to wait for 9 years to get a proper diagnosis! What hell for you. You say you are holding off on the heavy duty pain killers until later. Are there any other treatments you know about for CIDP besides the IVIG infusions? I guess like neuropathy there is no cure for CIDP, correct? You mention cbd oil, that helps a lot of people for pain. I just hope and pray the IVIG continues to give you some relief. How long does that take in a given session? Earlier you mentioned they were 2 days every four weeks. So are you now going in 2 days every 2 weeks? It's great to get relief, but boy, it can sure be a hassle.

Curious, do you think there is a genetic/hereditary reason you developed this, or is there anything you can relate the cause of this to? Do you remember anything in your history prior to 2008 that foreshadowed this illness in some way?

I am glad you have posted here on Connect. And I look forward to following your progress from here out. My very best to you, Hank

Liked by sunnyflower

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@jesfactsmon

@jtbt0406
First let me just say how sorry I am that you lost your sister. Very sad.

What @sunnyflower says is right on. This is a good place to sanity check what is going on with your illness, for example back when your doctor was minimizing your symptoms, if you'd talked about it here you'd have most likely been advised to get a different opinion. Doctors, like plumbers or financial advisers or any field you name, run the gamut from really good to really BAD. And the result of going to a bad doctor can be consequential, only instead of having a water issue or losing money, your actual life can be on the line.

There should have been no reason you had to wait for 9 years to get a proper diagnosis! What hell for you. You say you are holding off on the heavy duty pain killers until later. Are there any other treatments you know about for CIDP besides the IVIG infusions? I guess like neuropathy there is no cure for CIDP, correct? You mention cbd oil, that helps a lot of people for pain. I just hope and pray the IVIG continues to give you some relief. How long does that take in a given session? Earlier you mentioned they were 2 days every four weeks. So are you now going in 2 days every 2 weeks? It's great to get relief, but boy, it can sure be a hassle.

Curious, do you think there is a genetic/hereditary reason you developed this, or is there anything you can relate the cause of this to? Do you remember anything in your history prior to 2008 that foreshadowed this illness in some way?

I am glad you have posted here on Connect. And I look forward to following your progress from here out. My very best to you, Hank

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Thank you for the support and prayers. There are other treatments however d/t the advanced CIDP they by passed several that most would start with. Stem cell I hear is an option. The Rituxan is a cancer drug that is not an approved treatment that my Mayo Clinic Neurologist suggested so my insurance refused to pay for even with supporting documentation from him. But the foundation at the pharmaceutical company is helping me get it. However, d/t the recent dx of Mediastinal Mass my local Neurologist stopped it until we figure out this mass and it’s treatment plan.
As for previous illnesses prior to CIDP, my immune system my who life was always kind weak. But when I got older in my 30’s I would get pneumonia once a year.
As for hereditary or not. There are 10 of us kids in my family. I’m the second youngest. My sister that had MM was 3rd youngest. Everyone else is healthy. Parents are in their mid 80’s and healthy. My sister with MM had a genetic Mutation but I don’t know what kind. I had her labs sent to my hematologist to review a year ago and don’t think he even looked at them.
Yes no cure for CIDP

Liked by Hank

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@jtbt0406

Thank you for the support and prayers. There are other treatments however d/t the advanced CIDP they by passed several that most would start with. Stem cell I hear is an option. The Rituxan is a cancer drug that is not an approved treatment that my Mayo Clinic Neurologist suggested so my insurance refused to pay for even with supporting documentation from him. But the foundation at the pharmaceutical company is helping me get it. However, d/t the recent dx of Mediastinal Mass my local Neurologist stopped it until we figure out this mass and it’s treatment plan.
As for previous illnesses prior to CIDP, my immune system my who life was always kind weak. But when I got older in my 30’s I would get pneumonia once a year.
As for hereditary or not. There are 10 of us kids in my family. I’m the second youngest. My sister that had MM was 3rd youngest. Everyone else is healthy. Parents are in their mid 80’s and healthy. My sister with MM had a genetic Mutation but I don’t know what kind. I had her labs sent to my hematologist to review a year ago and don’t think he even looked at them.
Yes no cure for CIDP

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@jtbt0406
Was a steroid treatment ever discussed with you in regards to CIDP? I see that it is one thing that is mentioned a bit in online articles. One thing I know is that when I was diagnosed with MS (and I know MS and CIDP are different, but there are similarities), I was admitted into the hospital and over the course of 3 days I was give an infusion of prednisone each day. After the 3 days my symptoms (which had been pronounced) were gone and I was 100% fully functional again, and stayed that way for a few years.

I can see where there could be a relationship between a weak immune system and an autoimmune disease such as yours. Sorry you did not have the same health as the others in your family (besides your sister of course). Wishing you the best, Hank

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