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Living with Polyneuropathy CIDP, GBS, & CMT

Hi, Family living with CIDP

I am still confused with the diagnosis of this neurological condition. My husband never had a severe muscle weakness or loss of reflexes until late in the disease. His main symptom was the pain. A pain that was so unbearable everybody thought it was beyond this illness and we thought that maybe a side effect of the condition such as depression. Depression might had been the culprit for this pain. So we concentrated in the relief of that pain. I think the treatments were not maximized. Plasmapheresis was not considered for being too invasive. He was presenting fractures in the left foot he never felt pain for or even realized when he had trauma to the foot. Pain, pain, pain was “our” daily ordeal. Ulcer in the left foot appeared one day and was the silent killer for almost three years.
I have read articles of the disease and there is not clear diagnosis, appear to be an spectrum of conditions, there are several variants of the condition. He is in peace at present but the one that does not live in peace is me because I think something more could have be done. But that is grief. Hope and more hope to people with this condition since researches are working in a medication to regrowth myelin.
Let’s pray for them.
Olgalie

Yup. No clear answers. My heart is with you. I have a similar experience - mostly sensory problems, pain and numbness. Best to you and your husband.