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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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josmio | @josmio | Feb 28 11:03pm
In reply to @josmio "Hi. I also had to wait until March to see a different neurologist. It’s been nearly..." + (show)
Profile picture for josmio @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.

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Thank you.

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josmio | @josmio | Feb 28 11:07pm
In reply to @josmio "Hi. I also had to wait until March to see a different neurologist. It’s been nearly..." + (show)
Profile picture for josmio @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.

Sent from Yahoo Mail for iPhone

REPLY
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louk | @louk | Oct 19 1:00am
In reply to @danawyn "I watched the videos and thanks. I was diagnosed using EMG testing done BY THE DOCTOR..." + (show)
Profile picture for danawyn @danawyn

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!!

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How do you get involved in those foundations ?

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bubbles85 | @bubbles85 | Dec 16 2:49pm
In reply to @kgitti "And let me add a bit more info. I know it is still active as I..." + (show)
Profile picture for kgitti @kgitti

And let me add a bit more info. I know it is still active as I take an energy dive and loss of sensation and control in my extremities (sometimes huge like today) before the weekly infusions. I never had nerve pain, thank god, but the secondary classification I tested positive for was Acute Motor Sensory Axonal Neuropathy.
I am on Hizentra which evens the lows out better than the by weekly IVIG did.

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@kgitti
I have had c.i.d.p from when I was 19 years old. 2004 I was made to stand for hour's this could be 4-8 hour's shifts. I have been paralyzed from the waist down in my 20s also blind at the same time. I have foot drop. Mobility problems. I did learn to walk again and recover from both paralyzed and Mobility. Foot drop i use a splint. Other health problems on top of this. I have non epilepsy, vertigo, migraines. Pains in my hands most day's were my had jerks so I drop whatever was in my hand. I am now 40. I have had blackouts and dizzy spells. Always told I am fine by hospital/doctors. Apart from the nerve condition they can't do anythink about. I am from UK. So it's a real fight telling the government I am ill and can't always do day to day thing's.

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bubbles85 | @bubbles85 | Dec 16 2:52pm

I think it depends on how bad it is. I have foot drop. So I will never recover. The nerve problems will never go away. So not a full recovery. But you will learn to just live with it.

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Garygirl | @taftst1 | Dec 19 4:24pm

Cidp is chronic. Are you receiving ivig? Or subq? That’s what stops the mylan from being destroyed. He was paralyzed from neck down. 7 weeks in the hospital with ivig then plasmapharsis. Then weeks of intensive rehab. Learning to balance and walk. If you are not set up for treatments monthly you will go backwards.

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fkfp | @fkfp | Dec 20 7:44am
In reply to @dlydailyhope "@kgitti How were you diagnosed with CIDP? Did they confirm with a spinal tap? I am..." + (show)
Profile picture for dlydailyhope @dlydailyhope

@kgitti
How were you diagnosed with CIDP? Did they confirm with a spinal tap? I am seeing a new neurologist end of April and will ask for EMG/nerve conduction testing, brain MRI, etc. I have read that a spinal tap is needed to confirm CIDP. My arms/hands/legs/feet and hips are so weak and it is hard to stand, walk, sit for very long. I also have balance issues and dizziness plus vision issues and confusion/memory/concentration issues.

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@dlydailyhope
After many MRIs, CT’s, Nerve conduction tests and two back surgeries I was finally diagnosed with CIDP through a spinal tap and myelogram. Just started IVIG infusions. Hope they help. It’s been a journey to get to this point. I have balance, weakness, fatigue issues, and am on a Rollator.

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