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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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Profile picture for josmio
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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