Has anyone really gotten over CIDP?

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.

@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.

@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.

Yes I had the positive spinal tap, numerous mri’s to rule out spinal problems MS ETC. and positive nerve conduction study plus positives on GM1 GANGLIOSIDE AB PANEL for GBS variants. Plus the definitive test copied below for peripheral axonal neuropathy variant. Note it is from St. Louis MS., Washington Medical School. I did not have to travel there. The only place I know it is done maybe. It was the final smoking gun. I do not have pain just weakness, sensory loss etc.

Please understand. I have a life, even a good life by most standards, most of my high school friends are dead. I’m able to work some, a successful artist/photographer and I compete with my Australian shepherd’s in Dog Agility when I’m feeling well with one being a two time champion since I got sick. But it’s a full time struggle/job in and of itself. Be well.

@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.

@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?

Unfortunately nothing has helped with my CIDP.
Have been on all the routine meds, and IVIG infusions also for 8 mos with no improvements.
Cannot take steroids due to hypertension history.
Right now I’ve been progressing slowly for past 12 years.
The numbness is now in my right hand,which affects me greatly, and I cannot hold things such as eating utensils,etc.
Trying to do it with my left hand,if possible.
I tried getting into Mayo Clinic in Arizona, but they’re not accepting any new Neuro patients at this time.
Meanwhile my balance issues are terrible, and I cannot feel my feet at all.
My quality of life stinks right now, and there’s a lot I can’t do because of it.
Good luck to you, hope you find some relief.

@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?

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.