Has anyone really gotten over CIDP?

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?

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.

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

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.

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.

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!!

Great idea and approach, thank you!

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

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.

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.