1. < Autoimmune Diseases

Anyone been diagnosed with CIDP? It's very rare

Posted by Foxauthor @foxauthor, Oct 28, 2011

Has anyone on this feed been diagnosed with CIDP (chronic inflammatory demylenating polyneuropathy)? It's very rare and not well known about. I can't even find it in the list of diseases on Mayo's site. It's on the web, and I am on the national registry with the GBS-CIDP national organization. Anyone else out there have it?

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tedjones77494 | @tedjones77494 | Mar 2, 2023

He truly is the great Physician! I have never prayed and not felt better 🙂

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mabelandlynne | @mabelandlynne | Mar 11, 2023

Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP !!!!
And I need help!!!! I need a support system of others fighting the same battle. For the most part, my family has pretty much checked out as a support system. In addition, I have been divorced for decades, and we never had children. So I'm out here, basically alone. ---- In addition, I have very little medical support in diagnosing my problem. The list of medical dismissals, or even upfront refusal to even see me, is too long to put in this document. I need support, and very much need directions on how to proceed from here, to get the best care possible. Thank you.
MabelandLynne (just one person).

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4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 11, 2023
In reply to @mabelandlynne "Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP..." + (show)
@mabelandlynne

Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP !!!!
And I need help!!!! I need a support system of others fighting the same battle. For the most part, my family has pretty much checked out as a support system. In addition, I have been divorced for decades, and we never had children. So I'm out here, basically alone. ---- In addition, I have very little medical support in diagnosing my problem. The list of medical dismissals, or even upfront refusal to even see me, is too long to put in this document. I need support, and very much need directions on how to proceed from here, to get the best care possible. Thank you.
MabelandLynne (just one person).

Jump to this post

Hello @mabelandlynne, @gsnmurthy, and @etohdr. I see that you each have recently joined Connect and wanted to welcome you. While you read the experiences of others I thought I would share this resource website in case you are not aware of it.

--- Support and Resources - GBS/CIDP Foundation:
https://www.gbs-cidp.org/support/.

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1 reply
etohdr | @etohdr | Mar 11, 2023
In reply to @johnbishop "Hello @mabelandlynne, @gsnmurthy, and @etohdr. I see that you each have recently joined Connect and wanted..." + (show)
@johnbishop

Hello @mabelandlynne, @gsnmurthy, and @etohdr. I see that you each have recently joined Connect and wanted to welcome you. While you read the experiences of others I thought I would share this resource website in case you are not aware of it.

--- Support and Resources - GBS/CIDP Foundation:
https://www.gbs-cidp.org/support/.

Jump to this post

Thsnk you!

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jshdma | @jshdma | Mar 12, 2023
In reply to @mabelandlynne "Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP..." + (show)
@mabelandlynne

Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP !!!!
And I need help!!!! I need a support system of others fighting the same battle. For the most part, my family has pretty much checked out as a support system. In addition, I have been divorced for decades, and we never had children. So I'm out here, basically alone. ---- In addition, I have very little medical support in diagnosing my problem. The list of medical dismissals, or even upfront refusal to even see me, is too long to put in this document. I need support, and very much need directions on how to proceed from here, to get the best care possible. Thank you.
MabelandLynne (just one person).

Jump to this post

Can you describe the symptoms? It has been suggested to me, but docs have ruled it out without explanation. I have a bunch of odd symptoms for many years, but no diagnosis. Thank you

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kimegraves | @kimegraves | Mar 12, 2023
In reply to @mabelandlynne "Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP..." + (show)
@mabelandlynne

Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP !!!!
And I need help!!!! I need a support system of others fighting the same battle. For the most part, my family has pretty much checked out as a support system. In addition, I have been divorced for decades, and we never had children. So I'm out here, basically alone. ---- In addition, I have very little medical support in diagnosing my problem. The list of medical dismissals, or even upfront refusal to even see me, is too long to put in this document. I need support, and very much need directions on how to proceed from here, to get the best care possible. Thank you.
MabelandLynne (just one person).

Jump to this post

To @mabelandlynne
I am so sorry to hear it has taken so long for you to finally have a medical diagnosis. It is a very challenging diagnosis and many providers are not familiar with the disease or what the presenting symptoms might be.
John Bishop sent you the site for GIB-CIDP foundation. This organization is wonderful, it provides support, patient and provider education and numerous excellent care centers that specialize in CIDP treatment. Every few weeks they offer web-seminars that are very helpful.
I am also very sorry to hear that you are without a support system, but you have come to the right place, we are all here for you! The best thing that I have to suggest is read everything you possible can about the disease and find a provider that is experienced in treating patients with this disease. Also, if you feel uncomfortable get a second opinion!!!!!! Starting treatment as soon as possible is very important…….. the GIB-CIDP foundation has a list of centers of excellence that have specialist that treat CIDP, hopefully you can find one close to you.
Be your own advocate, that is very important in today’s healthcare. Please keep us updated on your journey and this group is great about answering questions…..
If I can be of further assistance let me know.
Kim

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 12, 2023
In reply to @mabelandlynne "Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP..." + (show)
@mabelandlynne

Yes, I have JUST after 13 years of all the symptoms, FINALLY BEEN DIAGNOSED WITH CIDP !!!!
And I need help!!!! I need a support system of others fighting the same battle. For the most part, my family has pretty much checked out as a support system. In addition, I have been divorced for decades, and we never had children. So I'm out here, basically alone. ---- In addition, I have very little medical support in diagnosing my problem. The list of medical dismissals, or even upfront refusal to even see me, is too long to put in this document. I need support, and very much need directions on how to proceed from here, to get the best care possible. Thank you.
MabelandLynne (just one person).

Jump to this post

@mabelandlynne I understand your need for support. These diseases are so strange and doctors don’t now about them. I listened to a panel discussion on Wednesday and the speakers explained how doctors are taught to look for/diagnose horses and then a crowd of zebras come along and doctors are lost. These two organizations are dedicated to helping those like you who need support and direction. And the members of MayoClinicConnect are also here 24 hours a day to answer questions and give support. The first group, NORD, has information on support groups around the country. Give them a call!
https://rarediseases.org/
https://rarediseases.info.nih.gov/contact
For medical support you can research the Mayo Clinic Care Network, which consists of hospitals around the country that follow the Mayo Clinic philosophy. Here is a link:
https://mayoclinic.org/about-mayo-clinic/care-network/members
Can you call (or look up online) one of these organizations tomorrow and then let me know what you learn?

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1 reply
danawyn | @danawyn | Mar 13, 2023
In reply to @becsbuddy "@mabelandlynne I understand your need for support. These diseases are so strange and doctors don’t now..." + (show)
@becsbuddy

@mabelandlynne I understand your need for support. These diseases are so strange and doctors don’t now about them. I listened to a panel discussion on Wednesday and the speakers explained how doctors are taught to look for/diagnose horses and then a crowd of zebras come along and doctors are lost. These two organizations are dedicated to helping those like you who need support and direction. And the members of MayoClinicConnect are also here 24 hours a day to answer questions and give support. The first group, NORD, has information on support groups around the country. Give them a call!
https://rarediseases.org/
https://rarediseases.info.nih.gov/contact
For medical support you can research the Mayo Clinic Care Network, which consists of hospitals around the country that follow the Mayo Clinic philosophy. Here is a link:
https://mayoclinic.org/about-mayo-clinic/care-network/members
Can you call (or look up online) one of these organizations tomorrow and then let me know what you learn?

Jump to this post

I would also add the GBS-CIDP Foundation website at http://www.gbs-cidp.org
They are and invaluable tool for me!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 13, 2023

@danawyn Thank you for those resources! They will be helpful to so many members!

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sherylynn | @sherylynn | Mar 31, 2023

My grandson was diagnosed with CIPD on his 16th birthday. We spent 2 months in the hospital and have been home for the last 9 weeks. He has gained weight and strength, but that's about it. He is doing infusions every 3 weeks, therapy weekly and steroids daily. He is in a wheelchair and can walk somewhat with a walker. Is this normal?

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