CIDP related to Covid?

Posted by bearmom @bearmom, Jun 5 5:36pm

I was diagnosed with CIDP in 2022. I started developing symptoms about 6 weeks after I had a mild case of COVID. Some of my physicians believe there is a link there while others do not. Has anyone else been told they may have developed CIDP due to COVID?

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beverly48 | @beverly48 | Jun 6 11:25am

What is the abbreviation , CIDP ?

bearmom | @bearmom | Jun 6 2:48pm

In reply to @beverly48 "What is the abbreviation , CIDP ?" + (show)

Chronic inflammatory demyelinating polyneuropathy

hockey65 | @hockey65 | Jun 7 4:34am

How were you diagnosed? What tests did they do? I am almost positive I have this or GBS after Vac . How will they treat you?

arlenelmh | @arlenelmh | Jun 7 3:52pm

I was diagnosed with limited systemic scleroderma following Covid where I had similar symptoms (Covid toes and finger issues), not CIDP. My husband got transverse myelitis from Covid and needed multiple courses of plasmapheresis to halt it from reaching his diaphragm. His feet are still numb 2 years later. I wonder if he should be tested for that.

bearmom | @bearmom | Jun 7 8:11pm

In reply to @hockey65 "How were you diagnosed? What tests did they do? I am almost positive I have this..." + (show)

It took around a month and 3 different hospitals to get a diagnosis. There were numerous blood tests, MRIs and lumbar punctures. I had to transfer to a different hospital at one point because the hospital I was at was unable to do some of the more advanced tests needed for a diagnosis. The doctors finally got to a diagnosis by ruling out everything else closely related and by what treatments worked and didn’t work. Neither high dose IV steroids or plasma exchange worked for me. IVIG was what finally worked. I get a 4 hour infusion every 3 weeks. That and an immunosuppressant are my main treatments along with numerous other medications to help with everything that came along with it. I was a healthy 49 year old when this came on. I got the COVID vaccine about 6 months before it happened, so my doctors don’t think the vaccine had anything to do with it, but rather COVID itself since I had it 6 weeks before my symptoms started and a lot of times it’s brought on by a viral infection. This is the chronic version of GBS. How long have you had symptoms?

bearmom | @bearmom | Jun 7 8:26pm

In reply to @arlenelmh "I was diagnosed with limited systemic scleroderma following Covid where I had similar symptoms (Covid toes..." + (show)

Transverse myelitis is also part of my diagnosis since I have a signal change in my thoracic cord, bladder symptoms, weakness and at one point was paralyzed from the neck down, on a ventilator (because it was affecting my diaphragm) and a feeding tube. My feet are still very numb as well 3 years later. Has his doctor ever mentioned IVIG?

arlenelmh | @arlenelmh | Jun 7 11:52pm

In reply to @bearmom "Transverse myelitis is also part of my diagnosis since I have a signal change in my..." + (show)

No.

itsmeagain | @itsmeagain | Jun 8 6:19pm

In reply to @bearmom "It took around a month and 3 different hospitals to get a diagnosis. There were numerous..." + (show)

@itsmeagain
My CIDP started one day after my second vaccine. I’ve had it 4 1/2 years. I take ivig two days every month.
My dr and I feel I have plateaued and I don’t know what comes next.
Curtailing the ivig set me back so I can’t give that up.