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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Autoimmune Diseases | Last Active: May 2 12:23pm | Replies (261)
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@amylhoffman

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.

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Replies to "My Fiance was diagnosed with cidp 20 pluss years ago his first hospitalization was a couple..."
Lori, Volunteer Mentor | @loribmt | Jan 3, 2022

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?

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