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CIDP Diagnosis

Posted by hjw473 @hjw473, Dec 10, 2025

I was diagnosed with CIDP a little over a year ago. I have symptoms that could or could not be attributed to CIDP, I can't seem to get anyone to take everything as a whole and work on the big picture. I am so frustrated. What are your symptoms, experience with CIDP, treatment(s), team? One doc?

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jarrell1 | @jarrell1 | Dec 12, 2025

ive cidp 12 years , they have to do nerve study and lumbar punture to confirm, i take vygart once weekly for 8 weeks now and this is the best my feet and legs have been in several years. I dont use walker or cane but still have balance issues. work out 3 times a week 69years old.Hope this helps

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fkfp | @fkfp | Dec 20, 2025

I should’ve been diagnosed with CIDP at least two years previous to my diagnosis. A spinal tap and myelogram pushed me over the diagnostic edge. Consequently, I just had my first intervenous immunoglobulin infusion. It is my understanding that it will take a while, but could be very helpful.

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fkfp | @fkfp | Dec 22, 2025

I too have been diagnosed with CIDP and believe that I am on the cusp with that diagnosis. It has been a long frustrating journey. I just started IVIG infusions. I’m hoping they will help. Very frustrating. Need a walker to get around. Can’t seem to get much advice.

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fkfp | @fkfp | Dec 22, 2025
In reply to @jarrell1 "ive cidp 12 years , they have to do nerve study and lumbar punture to confirm,..." + (show)
Profile picture for jarrell1 @jarrell1

ive cidp 12 years , they have to do nerve study and lumbar punture to confirm, i take vygart once weekly for 8 weeks now and this is the best my feet and legs have been in several years. I dont use walker or cane but still have balance issues. work out 3 times a week 69years old.Hope this helps

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@jarrell1

Did you do IVIG infusions first?

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mikeyindiana | @mikeyindiana | Dec 31, 2025

I was diagnosed in October after two months of testing.
I have no pain, thss as nkful for that. My feet are numb and I believe slowly advancing up towards my knees. Numbness causes balance problems, dizziness and falls. I walk with a cane and am quite mobile. Neurologist and Nurse Practitioner treat me for CIDP and Essential Tremor which runs in my family. I have also been to two different Motion Disorders clinics. I was prescribed am Vyvgart Hytrulo self administered preloaded syringes for the CIDP. #9 injection today. I think it helps but very early in the process. Hopes this helps.
Best wishes.

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med951 | @med951 | Jan 1 2:42pm

How do they confirm a diagnosis of CIDP? My rheumatologist mentioned it but nothing further was done. Thanks.

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dthorson | @dthorson | 1 day ago

I was diagnosed with CIDP around two years ago. I am currently doing IVIG treatments. They confirmed it was CIDP by doing a lumbar puncture and nerve tests. I go through the Mayo Clinic in Rochester Minnesota.
I feel like I currently live a fairly normal lifestyle, but most things with my hands, and the dexterity of my fingers is impacted. My balance is affected, but the IVIG infusions help this.
I’m just wondering if anyone with CIDP has trouble with blood pressure? I’m having a lot of trouble getting my blood pressure under control and I’m not sure if it’s related to CIDP or heart surgery that I had about 10 months ago.
I also have unexplained weight loss. Anyone else have trouble with weight loss?
Thanks.

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