CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Good morning @davehayward1 . I’m so glad that you have found a doctor that you like and can trust! And a doctor that is willing to talk things over with you! Do you have any special tips for working with a doctor that you could share?

Hi Becky
I like to prepare as I would for a business meeting.
When I met with Neurologist number two I brought along notes and test results from Neurologist number one.
I also typed up a list of my symptoms including a timeline.
I included dietary habits, lifestyle notes (work, exercise, etc ) and all meds and supplements.
I tried to anticipate all questions I might encounter.
Finally I listed all of my questions.
I asked them toward the end of our discussion (as, toward then end, I realized many had already been answered).
I find it very difficult to describe symptoms so I like to give them a lot of thought and type them out beforehand.
I find, by anticipating the Dr 's
questions, preparing answers, and having my questions in front of me, we are able to accomplish a lot more in the allotted time.
I never ask the Dr. to predict the future.
Questions such as:
"Can you cure me"?
"Can you stop this"?
"What will my life be like?"
only put the Dr. on the spot.
He/she will do their best.
If I feel uncomfortable with "their best" it's time to find another Physician

I begin my 5th (of 6) round of infusions tomorrow to treat CIDP. 3 consecutive/6 hr. days, every 4 weeks. Upon completion, in January, my Neurologist will conduct another EMG/NCS test and compare the results to that which was conducted prior to the infusions. Based upon the sensations I have reported, she feels Ivig has likely been unsuccessful in combating small fiber/sensory nerve problems. The test in January will determine whether or not it has been of value in controlling large/motor fiber issues.
If not, she does not have additional treatment protocols to recommend. I do not require meds yet but will return to her when the time comes. In the mean time, assuming things go as expected, I will schedule an appointment with a Dr. who heads up a team that is involved in both treatment and research.

I begin my 5th (of 6) round of infusions tomorrow to treat CIDP. 3 consecutive/6 hr. days, every 4 weeks. Upon completion, in January, my Neurologist will conduct another EMG/NCS test and compare the results to that which was conducted prior to the infusions. Based upon the sensations I have reported, she feels Ivig has likely been unsuccessful in combating small fiber/sensory nerve problems. The test in January will determine whether or not it has been of value in controlling large/motor fiber issues.
If not, she does not have additional treatment protocols to recommend. I do not require meds yet but will return to her when the time comes. Assuming things go as expected, after we discuss the results of the ENG/NCS in January, I will schedule an appointment with a Dr. who heads up a team that is involved in both treatment and research.

My Fiance was diagnosed with cidp 20 pluss years ago his first hospitalization was a couple months at that time we were not together moving forward last year in October we took him to the hospital he couldn't talk he couldn't walk his body was weak his hands mouth and feet completely numb. He progressed to get worse in the hospital but under when his first IV IV treatment he went to a rehab floor to get physical therapy with the host to come home he was transferred to a nursing home where he ended up after two days with pneumonia and put on a ventilator twice due to his extreme weakness in his mouth he was an able to swallow his own saliva and was choking. The first time he spent roughly a month on the ventilator taken off did well for about a week and got weak again and was placed back on a ventilator. Many ups and downs since October he is still in the hospital in the nursing home facility in New York City. Our newest concern it should he get a covid-19 vaccine or not.

Hi Amy, we’re not medical professionals in the Connect forum but we can rely on our personal experiences to help other members.

Your fiancé has certainly had his share of medical issues over the years. The Chronic Inflammatory Demyelinating Polyneuropathy is a serious neurological disease that damages the myelin sheath around the spinal cord.
As a side effect from my stem cell transplant, I had a severe reaction which led to demyelination of areas of my spinal cord with similar debilitating symptoms as your fiancé. With treatment, it regenerated and I was fine. However, two weeks after my first Pfizer vaccination, March 2021, I began experiencing similar symptoms to the situation which led to my loss of feeling from waist to toes a year before. The feelings were mild but needless to say, it raised some red flags. So a quick call to my transplant Dr at Mayo prompted an immediate visit with him and a neurologist at Mayo for an MRI. Thankfully there was no repeat of the disease.

However, my neurologist told me there is evidence in some people with pre-existing neurological conditions, such as Bells Palsy, Shingles, neuropathy, etc, that the virus itself and/or the vaccine may cause the body to have an immune response and temporarily reactivate symptoms of the pre existing neurological condition but that it’s usually short-lived. Without treatment, my symptoms all disappeared within 2 weeks. The subsequent vaccine and booster had no ill effects.

I can understand your and your fiancé’s hesitation in getting the vaccination under these circumstances. This is something that needs to be discussed with his neurologist. You don’t want to do anything that may spur a new reaction CIDP. In the meantime, since his condition makes him vulnerable to the virus, you both need to be vigilant in the avoidance of covid.

Have you discussed this with his neurologist?

I meet with a top notch neurologist tomorrow I believe it’s to discuss IVIG treatment. We shall see.

It has been my understanding that CIDP affects the peripheral nervous system. Your indication that it affects the myelin that surrounds the spinal cord (which is part of the Central Nervous System) is new to me. I am a bit surprised to hear this

Hi Dave, CIDP (chronic inflammatory Demyelinating Polyneuropathy) does effect the peripheral nervous system directly by removing the myelin sheath round the spinal cord. With that insulation gone, the peripheral nerves are left unprotected and the patient loses sensation of the peripheral nervous system. The key words are ‘inflammatory demyelinating” it’s the the inflammation on the myelin sheath and subsequent breakdown of the myelin that causes the damage and the symptoms.

In my case it was an autoimmune attack on the myelin sheath. The inflammation caused the erosion of the protective myelin, leaving my spinal cord exposed and caused my symptoms. 1g daily of iv steroids for 3 days helped stop the progression. But then I had 500mg weekly for months. My condition was caused by graft vs host disease from my transplant. But the end result was caused by inflammation.

I’m on the road today so away from my computer for a few hours. But I did find this article for you.
https://www.ninds.nih.gov/Disorders/All-Disorders/Chronic-Inflammatory-Demyelinating-Polyneuropathy-CIDP-Information-Page
Is this helpful for you?

Thank you for getting back to me. If I understand correctly, there are various "Demyelinating Diseases" of which CIDP is just one. It seems CIDP affects the peripheral nervous system exclusively. Others, however may affect the PNS and/or the CNS.