CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

It’s hard to find a PT with experience with this disease. As it is different than MS. But that may be the best you can find as they are both demialating diseases. I find isometrics most useful in that they build strength but don’t trigger exhaustion. You have to find that point of exhaustion and work right up to it.

Scott22 @scott22

jshdma
You can look CIDP on line or on YouTube. There are symptoms that I have and will only refer to them. It started with pin and needles feeling in both feet, after some time maybe a year or so both of my feet were getting numb, it progressed up both legs with stabbing pain, but not constant. I had an EMG test on June 2023 and the results diagnoses was Sever Demyelinating and Axonal Sensorimotor Polyneuropathy. With both my feet numb I couldn’t balance standing and had to hold on to anything to prevent falling.

I was diagnosed - two separate neurologists - with CIDP in 2020. I had 16 IVIG treatments over 11 weeks and it helped with the inflammation. I find taking r lipoic acid pills helps. Several studies suggest alpha-lipoic acid helps lower blood sugar levels. Its ability to kill free radicals may help people with diabetic peripheral neuropathy, who have pain, burning, itching, tingling, and numbness in arms and legs from nerve damage.

Scott22 @scott22

I was diagnosed with CIDP and after testing the neurologist said that it’s idiopathic. For all of you that are having treatments were you diagnosed with a cause for your CIDP ? I don’t know what treatment the neurologist will recommend on June 4, 2024. So if you are getting treatment, what treatment and is it helping. Thank you, Scott22

My CIDP was preceded by an odd virus, somewhat like a mild stomach virus. It produced daily, a form of migraines that were new to me for 6 weeks.
Following the migraines the CIDP peripheral neuropathy appeared.
I receive Hizentra SCIG and an occasional run of steroids. They keep it at bay.

I have 3 other autoimmune diseases which made me susceptible to developing another (CIDP). The symptoms were insidious and progressive over about 10 years (undiagnosed). Last August I got acutely and severely worse and ended up in hospital 2 weeks into a Covid infection. Was treated with IVIG x 5 days, which worked great for about 2 weeks. I have been on it ever since but it’s not working as well now so I am waiting to go on Rituxan, an IV biologic infusion. I am also on 20mg Prednisone daily for RA, lupus and it helps with CIDP too. Doing PT to preserve what little muscle mass and strength I have. I hope you have successful treatment!

My symptoms started the same way as yours.
At home I use a rollator to get around because sometimes I too cannot stand without wee bling back and forth.
I cannot feel my feet either, and cannot grasp with my toes.
I even lose my balance trying to stand and pull my pants on.
I rarely walk anywhere these days without a cane or a walker.

I was told that either my CIDP was autoimmune, genetic or caused by something like a virus.
That’s all I got.
Right now I’m seeing a new neurologist,probably my 7th one over the past 10 or more years,in a few weeks,in another state also,because I’ll be moving when my new home is built.
Right now I’m off Gabapentin, and the rest of the usual prescribed drugs that are given for this condition.
Nothing worked for me,even infusions of IVIG did not help.
I am considering Rituxan, a new infusion they want me to have, but my insurance won’t cover a lot of it, and I have a $700 copay per infusion,and I will need at least 6, maybe more.

Hello! Do you happen to know how many women on this website has been diagnosed with CIDP? I was reading a medical journal and at least 96 % are all male. I have been diagnosed with severe axonal senorimotor peripheral polyneuropathy, small fiber neuropathy, gastroparesis, tremors (negative for Parkinson’s caused by the neuropathy) along with cardiac autonomic neuropathy. I have tested positive for over four years for the Epstein Barr Virus. The Guillain Barre Syndrome is a problem of the EBV. My symptoms are on the extreme side. There is a doctor wanting to test me for CIDP? I am wondering if it’s a waste of my time. Was everyone immediately diagnosed with CIDP? Or did you have neuropathy and it progressed to CIDP? Mine is autoimmune all my markers are elevated but I test negative for everything.
I know IVIG therapy as an RN builds up your immunity. Technically, people with CIDP are on steroids and immunotherapy. These lower your immune system so they add IVIG therapy. They recommend it for the rest of your life. If you stop IVIG it gets progressively worse and you can’t reverse the damage.

I was immediately diagnosed with CIDP (2 Neurologists). I did one series of 16 IVIG infusions and that was the only treatments I received. No on-going protocol. I apparently have a CIDP variant. No steroids. No progressive damage. CIDP has "many" different aspects.