1. < Autoimmune Diseases

Has anyone really gotten over CIDP?

Posted by kgitti @kgitti, Apr 3 3:28am

I’ve had it since late 2019 and worked very hard to keep it under control with weekly SCIG infusions (IVIG AT FIRST), regular PT, exercise, periodic steroid runs, low inflammation diet, weight loss etc.
When it started I couldn’t comb my hair but I am able to do some work and limited exercise now.
But I still battle with enormous exhaustion daily and depression at facing this every morning (and yes I take antidepressants).
And every time I get a virus it sets me back for weeks.
Overall I suppose I am holding my own-overall it’s not getting any worse.
But I have never experienced anything I would call a true remission.
Is there such a thing?

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kgitti | @kgitti | Apr 5 11:38am
In reply to @dlydailyhope "@harley22 I have the same symptoms. My journey has been 12 years, too, but significant symptoms..." + (show)
@dlydailyhope

@harley22
I have the same symptoms. My journey has been 12 years, too, but significant symptoms showing up 7 years ago. My burning, pins/needles and numbness started in my feet and I now have it in my hips/legs and arms/hands. It is like it has traveled and expanded throughout my peripheral nervous system. I have balance issues and get dizzy since I don’t always feel my feet and limbs and hands are weak (drop things and have hurt joints due to the weakness).

What is scary is I am 54 and don’t know what the rest of my life will be like with all of these symptoms. I am always exhausted after doing very little and spend most of my time in bed or on the couch. I am afraid to take some of the medications I have read about if I get diagnosed with MS or CIDP due to side effects. Every time I get a new virus, my body really takes a hit and seems my nerves are affected, too.

How do you cope?

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My neuropathy is equally bilateral both arms and legs so I work the PT as much as I can. I take Ritalin daily for the exhaustion and a run of oral Prednizone when a virus won’t let go of me-just 3 times in the last two years for like long Covid and Norovirus. I use Every weapon I can find. I have found good doctors. I am NOT at the Mayo but in Albuquerque NM. Believe me it’s hard to find good docs in a town this size.

You have to be super proactive with your health as the nerve damage is much easier to pause than repair. I CAN’T emphasize that enough.

REPLY
kgitti | @kgitti | Apr 5 11:54am
In reply to @dlydailyhope "@kgitti Thank you for the information. I greatly appreciate it. I will need to look at..." + (show)
@dlydailyhope

@kgitti
Thank you for the information. I greatly appreciate it. I will need to look at my blood work done in 2017 and 2019 to see if any of what you had done was done as a baseline for anything updated in 2024.

Did you ever have a small fiber neuropathy punch biopsy? I had samples taken for upper thigh and calf and was diagnosed with idiopathic small fiber neuropathy (severe). My neurologist at the time did nothing to treat me. I started talking alpha Lipoic acid to help with burning feet and used capsaicin nerve pain creams which helped some.

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No I did not have the biopsy. Your neurologist was not good to not treat you. The neuropathy is much easier to halt than repair. I have tried the ALA but not sure it does anything.

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kgitti | @kgitti | Apr 5 11:58am
In reply to @harley22 "Honestly I don’t know how I cope really. Some days are better than others. I’m a..." + (show)
@harley22

Honestly I don’t know how I cope really.
Some days are better than others.
I’m a stay at home much more than I used to be due to my mobility issues.
I use a rollator when I need to, and I have hand controls in my car.
I was very independent before all this started affecting me.
It’s just frustrating to say the least.

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There are some new drugs coming thru MS nerve demialating research that should help us. Probably too late for me, but maybe for someone your age. 🙏🏻

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danawyn | @danawyn | Apr 5 12:24pm
In reply to @dlydailyhope "@kgitti I am waiting to be tested for MS and CIDP. The symptoms are terrible and..." + (show)
@dlydailyhope

@kgitti
I am waiting to be tested for MS and CIDP. The symptoms are terrible and I feel for you and your suffering and struggle. I have been suffering a downward decline since 2017. My depression and extreme exhaustion keeps me in bed or on the couch most days and if I do anything, I pay for it physically for days.

My hope is for diagnosis and treatment to stop further decline. I am a 54 year old single parent of a 14 year old son who depends on me. I lost my job in October and unable to work now. Hoping to qualify for disability at this point since I can get out of bed or do much most days. It would be wonderful to hear if anyone has improved following a CIDP diagnosis.

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I was diagnosed in 2014 and started IVIG shortly thereafter. In December of last year, my Dr and I decided instead of considering scig We should consider discontinuing treatment. Thus far I am symptom Free and free and hope to continue to be that way

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1 reply
kgitti | @kgitti | Apr 5 1:16pm
In reply to @danawyn "I was diagnosed in 2014 and started IVIG shortly thereafter. In December of last year, my..." + (show)
@danawyn

I was diagnosed in 2014 and started IVIG shortly thereafter. In December of last year, my Dr and I decided instead of considering scig We should consider discontinuing treatment. Thus far I am symptom Free and free and hope to continue to be that way

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Wow. That is terrific!
What were the tests that were done to confirm the diagnosis to begin with if you don’t mind me asking.
The positive test requirements have become more focused now sometimes eliminating years of unnecessary or alternate treatments. Not saying you weren’t, just curious. This is not the video I am looking for on the new protocols but it is useful I think for those looking at treatment. I’ll look for the other one too.
https://youtu.be/I93c6Y_sYQQ?si=-u8Q9o0Q92DC5mGY

Here it is:
https://youtu.be/x-oTDZOsEhQ?si=1jVJZYPiCEpKqkpa

And this too:
https://youtu.be/pUHSIzRsRxc?si=G8r-h81yYYDxVLRw

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1 reply
kgitti | @kgitti | Apr 5 2:29pm
In reply to @dlydailyhope "@kgitti What were your earliest symptoms that led you to getting diagnosed with CIDP? How long..." + (show)
@dlydailyhope

@kgitti
What were your earliest symptoms that led you to getting diagnosed with CIDP? How long did it take for you to get properly diagnosed and treated?

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Following an odd virus, I keep saying 2019. But it was late summer of 2020 I think, I started having numbness and tingling in my lower legs, suspecting a spinal problem. I had numerous tests including MRIs. The numbness and tingling moved rapidly into my lower arms and my regular neurologist hospitalized me at Xmas. I fought her on this hoping it was spinal. More tests more MRIs looking at MS etc. Nothing. An awesome neurologist working the floor thought they were heading the wrong direction and asked to keep me a few more days for more tests and did a spinal tap. It was off the chart and a nerve conduction study. Terrible. By New Years they were blasting me with IVIG and corticosteroids. He might have kept me out of a wheelchair.

REPLY
danawyn | @danawyn | Apr 5 2:48pm
In reply to @kgitti "Wow. That is terrific! What were the tests that were done to confirm the diagnosis to..." + (show)
@kgitti

Wow. That is terrific!
What were the tests that were done to confirm the diagnosis to begin with if you don’t mind me asking.
The positive test requirements have become more focused now sometimes eliminating years of unnecessary or alternate treatments. Not saying you weren’t, just curious. This is not the video I am looking for on the new protocols but it is useful I think for those looking at treatment. I’ll look for the other one too.
https://youtu.be/I93c6Y_sYQQ?si=-u8Q9o0Q92DC5mGY

Here it is:
https://youtu.be/x-oTDZOsEhQ?si=1jVJZYPiCEpKqkpa

And this too:
https://youtu.be/pUHSIzRsRxc?si=G8r-h81yYYDxVLRw

Jump to this post

I watched the videos and thanks. I was diagnosed using EMG testing done BY THE DOCTOR not a technician as well as physical testing of strength and numbness. I had no interest in steroid treatment because of the long term side effects to bones etc. I am glad I did Ivig and really hopeful that I stay where I am. I still have residual numbness and balance issues but I probably always will have that. I volunteer with the GBS/CIDP Foundations as well as Sining through CIDP. ALso being interviewed next week by iHeart radio!!

REPLY
dlydailyhope | @dlydailyhope | Apr 5 2:50pm

@kgitti
I’m glad you were able to get help from the hospital neurologist to get the right testing. No one ever suggested a spinal tap for me. I do have cervical and lumbar spinal stenosis (congenital), degenerative disc disease, small fiber neuropathy (idiopathic) and cervical spondylitic myelopathy. Everything was tied to my spine but even after ACDF surgery for cervical spine and lumbar spine injections, nothing was helping the weakness and numbness/pins and needles/tingling and extreme exhaustion. Did you have bloodwork that pointed to an autoimmune illness and inflammation? I have had some indications of inflammation but no one looked further. After a while, I stopped going to my neurologist because I wasn’t being helped. My hope is my new neurologist will look at me holistically and do the right testing to get me the right treatment to stop further deterioration.

Have a nice weekend.

REPLY
2 replies
danawyn | @danawyn | Apr 5 3:29pm
In reply to @dlydailyhope "@kgitti I’m glad you were able to get help from the hospital neurologist to get the..." + (show)
@dlydailyhope

@kgitti
I’m glad you were able to get help from the hospital neurologist to get the right testing. No one ever suggested a spinal tap for me. I do have cervical and lumbar spinal stenosis (congenital), degenerative disc disease, small fiber neuropathy (idiopathic) and cervical spondylitic myelopathy. Everything was tied to my spine but even after ACDF surgery for cervical spine and lumbar spine injections, nothing was helping the weakness and numbness/pins and needles/tingling and extreme exhaustion. Did you have bloodwork that pointed to an autoimmune illness and inflammation? I have had some indications of inflammation but no one looked further. After a while, I stopped going to my neurologist because I wasn’t being helped. My hope is my new neurologist will look at me holistically and do the right testing to get me the right treatment to stop further deterioration.

Have a nice weekend.

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You too. Ask your neurologist to test for CIDP via EMG. I also had an MRI to rule out MS. I also have spinal stenosis and had surgery to fuse a couple of discs in 2018. You have to really advocate for yourself with the doctors to point them in the right direction!

REPLY
kgitti | @kgitti | Apr 5 3:29pm
In reply to @dlydailyhope "@kgitti I’m glad you were able to get help from the hospital neurologist to get the..." + (show)
@dlydailyhope

@kgitti
I’m glad you were able to get help from the hospital neurologist to get the right testing. No one ever suggested a spinal tap for me. I do have cervical and lumbar spinal stenosis (congenital), degenerative disc disease, small fiber neuropathy (idiopathic) and cervical spondylitic myelopathy. Everything was tied to my spine but even after ACDF surgery for cervical spine and lumbar spine injections, nothing was helping the weakness and numbness/pins and needles/tingling and extreme exhaustion. Did you have bloodwork that pointed to an autoimmune illness and inflammation? I have had some indications of inflammation but no one looked further. After a while, I stopped going to my neurologist because I wasn’t being helped. My hope is my new neurologist will look at me holistically and do the right testing to get me the right treatment to stop further deterioration.

Have a nice weekend.

Jump to this post

As I remember I did have inflammation but that can point to so many things. I don’t think normal blood work alone point to auto immune problems specifically?
There is an important new classification you may run across in the videos. It is Called AN Autoimmune Nodopathies which is being seen perhaps as a related disease that has been misdiagnosed as CIDP. As it is not demialating other drugs may help. https://pubmed.ncbi.nlm.nih.gov/35989582/

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