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Living with Polyneuropathy CIDP, GBS, & CMT

Scalp Neuropathy/ Hair loss

Has anyone experienced scalp neuropathy with increasing hair loss. It’s not coming out in clumps but I am losing lots more hair that usual.

I am experiencing hair loss. Started out like a thinning and only got worse as my CIDP got worse. I have been taking vitamins for my hair twice a day. It slowed it down a little but not that much I also experience some tingling and numbness up the back of my head. I have lots of headaches. I am having trouble holding one of my eyelids open. I feel like I have to strain to hold it open if I don’t it will droop and I have to close it to keep from getting a headache. I am not sure if it is connected to my CIDP or not. My doctor don’t seem to know either.

Are you receiving any treatment for CIDP?
Do you have bald spots or did your hair all fall out?

I am getting IVIG every week because I was paralyzed from waist down but now I am walking with a walker some after two years of intense therapy. I don’t have any bald spots but my hair is so thin you can almost see through it. They are going to send me to another city to a neuro clinic that is supposed to have better doctors.

I don’t know where you are located. I am in FL and waiting for an appointment at the Mayo Clinic in Jacksonville. I hope you can get someplace good like that!

I have CIDP and GBS and have had spats of hair loss more than once and ut was always due to a medication reaction.

I have CIDP. My hair has thinned enough for me to notice, and my eyelashes fell out completely right after I started IVIG in March 2017. Now I have stumpy little eyelashes that won’t grow to normal size. I blame the IVIG, not the CIDP, although no doctor has been able to explain it.