I was only recently diagnosed with CIDP, but I have had it for over 13 years!! I have been unable to get ANY MEDICAL PROFESSIONALS to do ANYTHING to even diagnose it, let alone treat it because of how I got it!!! Johns Hopkins even said to me directly, on the phone, "If you insist on attributing your illness to "that", WE WILL NOT EVEN SEE YOU!!!!!" They have hung me out to dry (more appropriately - to die) because of a huge lawsuit back in 2001. I was attacked by something that attacks and eats the myelin sheath off the nerves!!!! And I know about demyelinating diseases because I had a little grand niece die at age 2 1/2 from Batten's Disease! ---- Frankly, I just don't know what to do with myself. It's a little bit late for early intervention!!! But I do want to live long enough to complete a very important book I have half written, and continue motivational speaking. Lynne Henry 5/14/2023
I was just diagnosed with CIDP. My symptoms started in April and I’m starting IGIV GAMMAGARD next week. Not all my test are supporting this diagnosis but my neurologist is basing it on main 2 - EMG/ nerve test and a little elevated protein.
I was just diagnosed with CIDP. My symptoms started in April and I’m starting IGIV GAMMAGARD next week. Not all my test are supporting this diagnosis but my neurologist is basing it on main 2 - EMG/ nerve test and a little elevated protein.
I was just diagnosed with CIDP. My symptoms started in April and I’m starting IGIV GAMMAGARD next week. Not all my test are supporting this diagnosis but my neurologist is basing it on main 2 - EMG/ nerve test and a little elevated protein.
Hello @goldacharna, I would like to add my welcome to Connect along with @dwyermw and others. Hoping your upcoming treatments will provide some relief for your CIDP symptoms.
@cgrogers hello,
My name is Kim and I also have been diagnosed with CIDP about 18 months ago. I think it would be wonderful to have a support group here at connect.mayoclinic.org.
I have look at all the sites that John sent you and they have also been very helpful.
I also had a very difficult time obtaining a diagnosis! I am a healthcare provider myself so I pushed and pushed and pushed until a very seasoned neurologist helped me and then once the diagnosis was made started my IGG infusions. I currently receive infusions every two weeks and the symptoms improve for about 10-12 days. I have said this on multiple group discussions that I also find that a low carb-sugar diet, daily exercise, and no alcohol also improves my symptoms. This can be a very frustrating and difficult diagnosis. I also take things much slower than at one time, if I over do I pay for it the next couple of days.
If you ever have any questions please feel free. Keep us informed on your progress.
Kim
@cgrogers hello,
My name is Kim and I also have been diagnosed with CIDP about 18 months ago. I think it would be wonderful to have a support group here at connect.mayoclinic.org.
I have look at all the sites that John sent you and they have also been very helpful.
I also had a very difficult time obtaining a diagnosis! I am a healthcare provider myself so I pushed and pushed and pushed until a very seasoned neurologist helped me and then once the diagnosis was made started my IGG infusions. I currently receive infusions every two weeks and the symptoms improve for about 10-12 days. I have said this on multiple group discussions that I also find that a low carb-sugar diet, daily exercise, and no alcohol also improves my symptoms. This can be a very frustrating and difficult diagnosis. I also take things much slower than at one time, if I over do I pay for it the next couple of days.
If you ever have any questions please feel free. Keep us informed on your progress.
Kim
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Hello Glenn @cgrogers, Welcome to Connect. You will find members talking about CIDP in the Autoimmune Diseases (https://connect.mayoclinic.org/group/autoimmune-diseases/) and Neuropathy (https://connect.mayoclinic.org/group/neuropathy/) support groups. Here are a list of the discussions related to CIDP that I found with search:
-- Anyone been diagnosed with CIDP? It's very rare:
https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/
-- CIDP (Chronic Inflammatory Demyelinating Polyneuropathy):
https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/
-- Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions:
https://connect.mayoclinic.org/discussion/cidp-having-ivig-reactions/
-- CIDP and concerns about treatment risk factors:
https://connect.mayoclinic.org/discussion/cidp/
-- Searching For Diagnosis. CIDP? Please Help Me:
https://connect.mayoclinic.org/discussion/searching-for-diagnosis-please-help-me/
More information on subscribing or unsubscribing to discussions and groups is available in the Help Center here: https://connect.mayoclinic.org/help-center/.
I look forward to learning more about you. What is your CIDP story? Are you getting treatment currently?
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2 ReactionsI was only recently diagnosed with CIDP, but I have had it for over 13 years!! I have been unable to get ANY MEDICAL PROFESSIONALS to do ANYTHING to even diagnose it, let alone treat it because of how I got it!!! Johns Hopkins even said to me directly, on the phone, "If you insist on attributing your illness to "that", WE WILL NOT EVEN SEE YOU!!!!!" They have hung me out to dry (more appropriately - to die) because of a huge lawsuit back in 2001. I was attacked by something that attacks and eats the myelin sheath off the nerves!!!! And I know about demyelinating diseases because I had a little grand niece die at age 2 1/2 from Batten's Disease! ---- Frankly, I just don't know what to do with myself. It's a little bit late for early intervention!!! But I do want to live long enough to complete a very important book I have half written, and continue motivational speaking. Lynne Henry 5/14/2023
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3 ReactionsI was just diagnosed with CIDP. My symptoms started in April and I’m starting IGIV GAMMAGARD next week. Not all my test are supporting this diagnosis but my neurologist is basing it on main 2 - EMG/ nerve test and a little elevated protein.
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2 Reactionsthere are many variance of CIDP
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2 ReactionsHello @goldacharna, I would like to add my welcome to Connect along with @dwyermw and others. Hoping your upcoming treatments will provide some relief for your CIDP symptoms.
You might find the following related discussions helpful.
— Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions:
https://connect.mayoclinic.org/discussion/cidp-having-ivig-reactions/
— CIDP and concerns about treatment risk factors:
https://connect.mayoclinic.org/discussion/cidp/.
Can you let us know how your treatment goes next week?
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2 ReactionsThank you! Will definitely update you.
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2 ReactionsAnd so many misdiagnosed.. just hoping for treatment to work, no other choice, my feet are getting worse..
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2 Reactions@cgrogers hello,
My name is Kim and I also have been diagnosed with CIDP about 18 months ago. I think it would be wonderful to have a support group here at connect.mayoclinic.org.
I have look at all the sites that John sent you and they have also been very helpful.
I also had a very difficult time obtaining a diagnosis! I am a healthcare provider myself so I pushed and pushed and pushed until a very seasoned neurologist helped me and then once the diagnosis was made started my IGG infusions. I currently receive infusions every two weeks and the symptoms improve for about 10-12 days. I have said this on multiple group discussions that I also find that a low carb-sugar diet, daily exercise, and no alcohol also improves my symptoms. This can be a very frustrating and difficult diagnosis. I also take things much slower than at one time, if I over do I pay for it the next couple of days.
If you ever have any questions please feel free. Keep us informed on your progress.
Kim
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2 Reactions@cgrogers Can you tell me what were the symptoms that led you to a diagnosis of CIDP?
Also, do you have to have infusions forever?
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1 Reaction@cgrogers
Also a great organization to look at is gbs-cidp.org
Kim
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