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?

@sunnyflower

Thanks so much Jim. How kind of you to take the time. I'm getting ready for bed and am so blessed by your message. Yes, it is, without a doubt, the peace of God through Christ that surpasses all understanding that keeps me sane and joyful in the midst of the fires! I wish the very same for you! Peace for your soul and a very well-rested night! Sweet dreams my friend! Sunnyflower

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@jimhd @sunnyflower
You two are both in my thoughts and prayers as I read these last two posts. Endless, unrelenting chronic pain which seems to have no end in sight, as soul crushing as it tries to be, can not crush the soul of one who has enough Faith in the lord. I am so very glad you both have that. I know beyond all doubt that whatever pain this life dishes out to you will be compensated for many times over in the next life. There is a reason for it all, but like you both have said (paraphrasing) it is beyond our ability to understand. May you both have peace and rest tonight. Hank

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@jesfactsmon

@jimhd @sunnyflower
You two are both in my thoughts and prayers as I read these last two posts. Endless, unrelenting chronic pain which seems to have no end in sight, as soul crushing as it tries to be, can not crush the soul of one who has enough Faith in the lord. I am so very glad you both have that. I know beyond all doubt that whatever pain this life dishes out to you will be compensated for many times over in the next life. There is a reason for it all, but like you both have said (paraphrasing) it is beyond our ability to understand. May you both have peace and rest tonight. Hank

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Hank and @jimhd listen to my devotion today: Praise in Suffering
“Praise can heighten your awareness that distressing circumstances are God’s blessings in disguise. Your trials rip away the flimsy fabric of your self-sufficiency. This makes room for God’s Spirit to weave into your life a true and solid confidence….the kind of confidence that Paul expressed in Philippians 4:13: “I can do all things through Christ who strengthens me”. As fire melts unrefined silver, bringing the impurities to the surface, so trials bring the “scum” to the top in your life. When you praise God in the midst of a trial, you cooperate with His plan to remove the scum; when you complain you resist His plan and stir the impurities right back into your character. The means that God, to accomplish His good purpose, may have to send or permit another trial; it may delay the unfolding of His good plan for you and you loved ones. Through praise you focus your attention on God. You acknowledge Him as your source of overcoming power. You begin to look at your problems from a new perspective…you compare them with your mighty, unlimited God, You see them as molehills rather than mountains, as opportunities rather than hindrances, as stepping stones instead of stumbling blocks. You have a part in making them the prelude to new victories, the raw materials for God’s miracles.” I can say this works for me! Many blessings, Sunny

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@sunnyflower

Hank and @jimhd listen to my devotion today: Praise in Suffering
“Praise can heighten your awareness that distressing circumstances are God’s blessings in disguise. Your trials rip away the flimsy fabric of your self-sufficiency. This makes room for God’s Spirit to weave into your life a true and solid confidence….the kind of confidence that Paul expressed in Philippians 4:13: “I can do all things through Christ who strengthens me”. As fire melts unrefined silver, bringing the impurities to the surface, so trials bring the “scum” to the top in your life. When you praise God in the midst of a trial, you cooperate with His plan to remove the scum; when you complain you resist His plan and stir the impurities right back into your character. The means that God, to accomplish His good purpose, may have to send or permit another trial; it may delay the unfolding of His good plan for you and you loved ones. Through praise you focus your attention on God. You acknowledge Him as your source of overcoming power. You begin to look at your problems from a new perspective…you compare them with your mighty, unlimited God, You see them as molehills rather than mountains, as opportunities rather than hindrances, as stepping stones instead of stumbling blocks. You have a part in making them the prelude to new victories, the raw materials for God’s miracles.” I can say this works for me! Many blessings, Sunny

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

Jim

Liked by lioness, phoenix0509

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@sunnyflower

Hank and @jimhd listen to my devotion today: Praise in Suffering
“Praise can heighten your awareness that distressing circumstances are God’s blessings in disguise. Your trials rip away the flimsy fabric of your self-sufficiency. This makes room for God’s Spirit to weave into your life a true and solid confidence….the kind of confidence that Paul expressed in Philippians 4:13: “I can do all things through Christ who strengthens me”. As fire melts unrefined silver, bringing the impurities to the surface, so trials bring the “scum” to the top in your life. When you praise God in the midst of a trial, you cooperate with His plan to remove the scum; when you complain you resist His plan and stir the impurities right back into your character. The means that God, to accomplish His good purpose, may have to send or permit another trial; it may delay the unfolding of His good plan for you and you loved ones. Through praise you focus your attention on God. You acknowledge Him as your source of overcoming power. You begin to look at your problems from a new perspective…you compare them with your mighty, unlimited God, You see them as molehills rather than mountains, as opportunities rather than hindrances, as stepping stones instead of stumbling blocks. You have a part in making them the prelude to new victories, the raw materials for God’s miracles.” I can say this works for me! Many blessings, Sunny

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@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

Liked by sunnyflower

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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/

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@jesfactsmon

@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

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Yes Hank! I find that if I'm not in my bible at minimum once a day, my day sucks! I mean I lose all perspective, God's perspective, on me and this temporary life here on earth. My focus becomes on myself and my circumstances and all the problems in the world instead of the One in control of them/us all! Hebrews 12:2-4 "fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.
3 For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart." Proverbs 3:5 "Trust in the LORD with all your heart; and lean not to your own understanding." Psalm 46:1 "God is our refuge and strength, a very present help in trouble." Ahhhhh, there, much better now! Blessings, Sunnyflower

Liked by Hank, DonT

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@colleenyoung

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/

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Oh my gracious, I did it again! I'm so sorry!!!! I didn't even think about that when I was responding to peoples responses!!!! Colleen, I honestly don't know if there is any hope for my memory! I'm really struggling w/ it in my life all the time! It's terrible! I am very sorry that I messed up again. Please forgive me. I will put me in a corner and spank me real good. Well, not exactly but I will beat myself up for it guarenteed. I will give it my best effort. Warmest wishes, Sunnyflower PS: If we go there, how will the group know when we've posted there? Will it be in the neurology group along w/ all the emails we receive about other subjects? Thank you!

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@sunnyflower

Oh my gracious, I did it again! I'm so sorry!!!! I didn't even think about that when I was responding to peoples responses!!!! Colleen, I honestly don't know if there is any hope for my memory! I'm really struggling w/ it in my life all the time! It's terrible! I am very sorry that I messed up again. Please forgive me. I will put me in a corner and spank me real good. Well, not exactly but I will beat myself up for it guarenteed. I will give it my best effort. Warmest wishes, Sunnyflower PS: If we go there, how will the group know when we've posted there? Will it be in the neurology group along w/ all the emails we receive about other subjects? Thank you!

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@jesfactsmon Hank, please see my reply to Colleen about the faith discussions. I forgot to include you in my reply once again. S

Liked by Hank

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@sunnyflower

Yes Hank! I find that if I'm not in my bible at minimum once a day, my day sucks! I mean I lose all perspective, God's perspective, on me and this temporary life here on earth. My focus becomes on myself and my circumstances and all the problems in the world instead of the One in control of them/us all! Hebrews 12:2-4 "fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.
3 For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart." Proverbs 3:5 "Trust in the LORD with all your heart; and lean not to your own understanding." Psalm 46:1 "God is our refuge and strength, a very present help in trouble." Ahhhhh, there, much better now! Blessings, Sunnyflower

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#sunnyflower Love your scriptures you read .God is my CEO make him that and trouble will not find you he,ll give you strength

Liked by sunnyflower

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@colleenyoung

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/

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@colleenyoung
Thanks for these links Colleen, and I appreciate what you are saying. Although I am not looking for a discussion about spirituality, it sometimes just comes up naturally in the middle of a conversation and I feel compelled to respond in some way. I always try to keep my posts on the shorter side if they are off topic. Whenever i come across posts by others that are not interesting to me personally I find it's not that hard to jump beyond them to wherever the conversation comes back to something more germaine. I hope others do the same. I will continue to try to keep off-topic posts short-ish but I hope that everyone, including myself, will feel free to say their thoughts and not self censor too much. But a little self-editing is always a good idea! Thank-you again for your inputs! Best, Hank

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@txamo

Hank, I did get infusions of Reclast for four years. I am being treated at UTSW in Dallas. My last bone scan was much improved. I felt that I did not have a choice of not getting some sort of bisphosphonate because I had so many fractures.

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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

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@jesfactsmon

@colleenyoung
Thanks for these links Colleen, and I appreciate what you are saying. Although I am not looking for a discussion about spirituality, it sometimes just comes up naturally in the middle of a conversation and I feel compelled to respond in some way. I always try to keep my posts on the shorter side if they are off topic. Whenever i come across posts by others that are not interesting to me personally I find it's not that hard to jump beyond them to wherever the conversation comes back to something more germaine. I hope others do the same. I will continue to try to keep off-topic posts short-ish but I hope that everyone, including myself, will feel free to say their thoughts and not self censor too much. But a little self-editing is always a good idea! Thank-you again for your inputs! Best, Hank

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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

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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 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
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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