CIDP/GBS

Posted by bjbates53 @bjbates53, Sep 27, 2023

I was diagnosed with CIDP in 2001. My neurologist says it is no longer active and the weakness I experience with exertion is from nerve damage. Anyone else have the same problem? I’m having difficulties exercising without wiping out for several days.

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Becky, Volunteer Mentor | @becsbuddy | Sep 28, 2023

@bjbates53 Have you had this severe fatigue since you were first diagnosed? Has it gotten worse? There is an ongoing CIDP support group that you may wish to check out . Someone there might have good advice.
https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/
You could start asking your questions there, also

Nemo1 | @nemo1 | Feb 21 4:49am

In reply to @becsbuddy "@bjbates53 Have you had this severe fatigue since you were first diagnosed? Has it gotten worse?..." + (show)

Do you have a link to share about CIDP - chronic inflammatory demyelinating polyradiculopathy?

Becky, Volunteer Mentor | @becsbuddy | Feb 23 8:58pm

In reply to @nemo1 "Do you have a link to share about CIDP - chronic inflammatory demyelinating polyradiculopathy?" + (show)

@nemo1 This information is from John Hopkins University
https://www.hopkinsmedicine.org/health/conditions-and-diseases/chronic-inflammatory-demyelinating-polyradiculoneuropathy#:~:text=Chronic%20inflammatory%20demyelinating%20polyradiculoneuropathy%20(CIDP)%20is%20a%20slowly%20developing%20autoimmune,in%20the%20arms%20or%20legs.
I hope it has the information that you want!

Nemo1 | @nemo1 | Feb 23 10:53pm

In reply to @becsbuddy "@nemo1 This information is from John Hopkins University https://www.hopkinsmedicine.org/health/conditions-and-diseases/chronic-inflammatory-demyelinating-polyradiculoneuropathy#:~:text=Chronic%20inflammatory%20demyelinating%20polyradiculoneuropathy%20(CIDP)%20is%20a%20slowly%20developing%20autoimmune,in%20the%20arms%20or%20legs. I hope it has the information that..." + (show)

Thank you Becky

John, Volunteer Mentor | @johnbishop | Feb 24 6:52am

In reply to @nemo1 "Thank you Becky" + (show)

@nemo1 You might also find this webinar on CIDP from the Foundation for Peripheral Neuropathy helpful.

Nemo1 | @nemo1 | Feb 24 7:33am

In reply to @johnbishop "@nemo1 You might also find this webinar on CIDP from the Foundation for Peripheral Neuropathy helpful...." + (show)

Thank you very much for the help John. I appreciate the information.

I watched the video. I saved the neuropathy foundation account so I can read up and listen to them.

The doctor woud not recommend over the counter (otc) supplements and left it to consumer to try or not try “otc” vitamins etc.

Thank you again for the link. I will use it as a resource for information.

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