Hi my son was diagnosed CIDP last month where he had bilateral weakness in arms. He received 5 day treatment of Ivig last month. Strength returned only to become weak in both arms and now legs. He is unable to bear weight. We are back in hospital and just started a higher dose of ivig over 2 days. Also prescribed the steroid methylprednisolone. He already suffers from severe sleep deprivation. Would this steroid be the best one to use and concerned of the return of symptoms so soon after the first treatment – does this indicate what my son’s future will be like? Many thanks in advance for your assistance.

I have Privigin every 3 weeks which gives me 1 week where I feel 70% normal. Approx a week prior to treatment I deteriorate but I now have a new issue where my taste of food is strange and my teeth feel like sharp edges. Can this disease affect the tongue? Had this symptom for 8 months but only occurs a week prior to every privigen treatment and then takes 1 week to feel back to normal after treatment.

I have Privigin every 3 weeks which gives me 1 week where I feel 70% normal. Approx a week prior to treatment I deteriorate but I now have a new issue where my taste of food is strange and my teeth feel like sharp edges. Can this disease affect the tongue? Had this symptom for 8 months but only occurs a week prior to every privigen treatment and then takes 1 week to feel back to normal after treatment. Thanks S

I have Privigin every 3 weeks which gives me 1 week where I feel 70% normal. Approx a week prior to treatment I deteriorate but I now have a new issue where my taste of food is strange and my teeth feel like sharp edges. Can this disease affect the tongue? Had this symptom for 8 months but only occurs a week prior to every privigen treatment and then takes 1 week to feel back to normal after treatment. Thanks S

I have Privigin every 3 weeks which gives me 1 week where I feel 70% normal. Approx a week prior to treatment I deteriorate but I now have a new issue where my taste of food is strange and my teeth feel like sharp edges. Can this disease affect the tongue? Had this symptom for 8 months but only occurs a week prior to every privigen treatment and then takes 1 week to feel back to normal after treatment. Thanks S

My wife is currently at Waitakere Hospital and her symptoms resembles that of GDS. this was her 2nd episode with the first happened back on 2023. Is it right to ask for proper diagnosis from a hospital’s neurologist or shall we ask for a referral and go private?

Hi, we are finding it very difficult to contact Mum’s specialist for some advice. Not sure if anyone there can help. Mum has CIDP. She takes 200mg of Methylprednisolone once a week. However, as the week goes on, she suffers more and more from anxiety, as well as sleeping all the time. She’s wondering about both splitting and increasing the dosage (as the CIDP seems to be getting worse and worse). She is thinking of taking 200mg on Tuesday, then 100mg on Saturday. Would you have any idea if splitting the dosage like this is safe and if this might curb the anxiety? Also, could it be that her CIDP seems to be getting worse because of the cold? She has gotten worse since taking the medication (3 weeks ago), which worries us a little.

My daughter is 24 years old and we are day 133 in hospital. We have an amazing team but they do not know much about CIDP. Is there any chance if my team could contact you for advice? She has a number of conditions but since October her mobility deteriorated she can no longer feel her legs from the knee down, and she has lost function in her fingers. She has seen a lovely neurologist in Palmy and did a nerve conduction test. She had no response in her legs and weak response in her hands. We have done 5 days ivig any other suggestions would be greatly appreciated.

My daughter is 24 years old and we are day 133 in hospital. We have an amazing team but they do not know much about CIDP. Is there any chance if my team could contact you for advice? She has a number of conditions but since October her mobility deteriorated she can no longer feel her legs from the knee down, and she has lost function in her fingers. She has seen a lovely neurologist in Palmy and did a nerve conduction test. She had no response in her legs and weak response in her hands. We have done 5 days ivig any other suggestions would be greatly appreciated.

My daughter is 24 years old and we are day 133 in hospital. We have an amazing team but they do not know much about CIDP. Is there any chance if my team could contact you for advice? She has a number of conditions but since October her mobility deteriorated she can no longer feel her legs from the knee down, and she has lost function in her fingers. She has seen a lovely neurologist in Palmy and did a nerve conduction test. She had no response in her legs and weak response in her hands. We have done 5 days ivig any other suggestions would be greatly appreciated.