Has anyone really gotten over CIDP?

Posted by kgitti @kgitti, Apr 3, 2024

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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@jsh468

Im here ten months later and waiting to finally see a neurologist in March. I’m in so much pain. All my symptoms started immediately after a surgery late May 2024. After what I believe now were several red herrings I will see a neurologist. I suspect CIDP because of the symptoms, onset, progression. The last month has been a drastic decline I believe due to significant external stressors. I’m scared. I know doctors don’t love when patients diagnose with Google so I’m on the fence about mentioning my suspicion of CIDP mostly because if I’m wrong I don’t want to bias the neurologist. Thoughts? Thanks for this post and to the folks who commented on it and I hope you’re all finding some relief.

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Welcome @jsh468, I'm sorry you haven't had any answers yet from the doctors you've seen following the surgery. I think I would try and plan your conversation with the neurologist so that you can explain when the symptoms first started and how they have progressed possibly due to significant external stressors. There is a great website with some tools to help you plan your conversation with the neurologist (or any healthcare appointment) that you might find helpful.

Tools for the Healthcare Visit: https://www.patientrevolution.org/tools

When is your appointment with a neurologist? Can you let us know what you find out?

REPLY

Hi. I also had to wait until March to see a different neurologist. It’s been nearly half a year. I usually just write all my symptoms and questions down on paper. My cognition slowed down and I have brain fog. I have difficulty choosing the right words. I have to remember to bring the CT scan of my head. The neurologist is from a different hospital and she is supposed to be one of the best.
I also go online and try to search for a diagnosis. It is scary not knowing and understanding what is happening to me but I usually would keep that finding to myself. I think that the doctor has the training, the expertise and experience to correctly diagnose my illness.
I hope that you’re able to talk to this doctor and that this neurologist takes the time to listen to you. I wish you get the help you need and feel better. Take care.

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@johnbishop

Welcome @jsh468, I'm sorry you haven't had any answers yet from the doctors you've seen following the surgery. I think I would try and plan your conversation with the neurologist so that you can explain when the symptoms first started and how they have progressed possibly due to significant external stressors. There is a great website with some tools to help you plan your conversation with the neurologist (or any healthcare appointment) that you might find helpful.

Tools for the Healthcare Visit: https://www.patientrevolution.org/tools

When is your appointment with a neurologist? Can you let us know what you find out?

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Hi there: My appt is Mar 10 for EMG/NCS and trying to get full eval scheduled same week. I'll let you know what i learn! Thank you for the encouragement!
Julie

REPLY

Don't use Google! Search the Mayo Clinic website or National Institute of Health (NIH.gov). Search your symptoms and show show THAT to your neurologist AFTER they examine you and give you their opinion. Then ask them if it COULD be CIDP. That way you are respecting their knowledge and expertise while also having some information in your back pocket. They will appreciate your not coming in with a pre-self-diagnosis and letting them investigate first.

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@josmio

Hi. I also had to wait until March to see a different neurologist. It’s been nearly half a year. I usually just write all my symptoms and questions down on paper. My cognition slowed down and I have brain fog. I have difficulty choosing the right words. I have to remember to bring the CT scan of my head. The neurologist is from a different hospital and she is supposed to be one of the best.
I also go online and try to search for a diagnosis. It is scary not knowing and understanding what is happening to me but I usually would keep that finding to myself. I think that the doctor has the training, the expertise and experience to correctly diagnose my illness.
I hope that you’re able to talk to this doctor and that this neurologist takes the time to listen to you. I wish you get the help you need and feel better. Take care.

Jump to this post

Thank you for your kind encouragement. I am also struggling with brain fog and now double vision. I will make a concise list of all my symptoms and when they happened and hopefully be able to have time to talk to the doctor about what's going on and hopefully get help.

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@danawyn

Don't use Google! Search the Mayo Clinic website or National Institute of Health (NIH.gov). Search your symptoms and show show THAT to your neurologist AFTER they examine you and give you their opinion. Then ask them if it COULD be CIDP. That way you are respecting their knowledge and expertise while also having some information in your back pocket. They will appreciate your not coming in with a pre-self-diagnosis and letting them investigate first.

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Also, I was diagnosed in 2014 (and did exactly what I stated above). After 10 years of twice monthly IvIG, I have been in remission without treatment since December 2023. We do and can recover!!! I will always have CIDP and their is always a chance of relapse but I am living each day like it is a gift!!

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@danawyn

Don't use Google! Search the Mayo Clinic website or National Institute of Health (NIH.gov). Search your symptoms and show show THAT to your neurologist AFTER they examine you and give you their opinion. Then ask them if it COULD be CIDP. That way you are respecting their knowledge and expertise while also having some information in your back pocket. They will appreciate your not coming in with a pre-self-diagnosis and letting them investigate first.

Jump to this post

Great idea and approach, thank you!

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@danawyn

Also, I was diagnosed in 2014 (and did exactly what I stated above). After 10 years of twice monthly IvIG, I have been in remission without treatment since December 2023. We do and can recover!!! I will always have CIDP and their is always a chance of relapse but I am living each day like it is a gift!!

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Oh my gosh thank you so much for this I needed some encouragement. Can you tell me how progressed your symptoms were when they finally diagnosed you and began treating you? One of my worries is that they won't be able to decide what I have and that they won't be able to help me while they try to figure it out. Been feeling these symptoms now for almost a year and I'm getting scared

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@jsh468

Hi there: My appt is Mar 10 for EMG/NCS and trying to get full eval scheduled same week. I'll let you know what i learn! Thank you for the encouragement!
Julie

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Ok super frustrztred. Finally got a call and not only have they improperly scheduled my nerve conduction study for half the time required they have no openings for an eval until late April. I've been trying to reach them for 3 week. I am flying in from out of state for these appointments. I am feeling so desperate and scared. i am losing my ability to walk and as you can tell from all the typing errors i am losing my ability to use my left hand. I am in so much pain. I feel helpless.

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@jsh468

Oh my gosh thank you so much for this I needed some encouragement. Can you tell me how progressed your symptoms were when they finally diagnosed you and began treating you? One of my worries is that they won't be able to decide what I have and that they won't be able to help me while they try to figure it out. Been feeling these symptoms now for almost a year and I'm getting scared

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I was dealing with complete neuropathy in my feet and hands accompanied by
an excrutiating burning sensation. Felt like i had pebbles in my shoes. Severe fatigue. Loss of coordination etc. i saw 3 neurologists before i found the right one!! Had to be semi-aggressive to get treatment. One neuro wanted to send me to a shrink! Advocate for
youself and do not take no for an answer.

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