8 years later of this video I am diagnosed CIDP. I am 32 years have always been active doing sport and gym. The woman described all I have been going through except that I have no problem in my arms. To be honest I cried so much due to how dramaticaly my legs were getting weak. Now that I began therapy I am glad that this video gave me hope that I will work and run again! Thank you very much!
This was put together in a perfect way for everyone to understand.My husband diagnoised with CIDP in Febuary 2012 .currently using IVIG every 2 weeks for about 6 weeks now,after a initial3 day treatment in Febuary.He was put on 80mg steroids after a relapse in march.In August started to have weakness and tingling again and had to stop work.(mail carrier)Having great results with IVIG .also a immunosuppresive.down to 30 mg steroids daily.Hoping to go back to work Middle of Oct.Thank You Jesus!
I'm 16 years old, and I got diagnosed with CIDP about 5 months ago. I tried a treatment called IVIG. But no luck for me, then I got prescribed Prednisone. It made a difference dramatically. I can run again, I can go up stairs with out holding on to anything, and jump a little bit. I just want whoever has CIDP to know that there is hope, and to look forward to getting better. -Sincerely, Renn Balzly
renn balzly Really? I’m the wife and I’ll try to be polite as you wouldn’t want my CIDP wheelchair bound husband who did IVIG that gave him a heart attack to respond to your bubbly filled with hope comment. He’s been to two of THE best neurologists in our area but to no avail. Are you absolutely or your Neurologist certain that you had CIDP?
renn balzly I’m also on Ivig and have cidp too and after 2 and a half years and many tests and blood work and many different specialists I finally know what’s wrong with me
My father was diagnosed with CIDP about 1997 at 59 years old. He was treated at Wake Forest University (Baptist Hospital) and went through all of the listed treatments included in this video. Unfortunately, the treatements did not work and he was completely chair-ridden and unable to care for himself. With such a poor quality of life, he decided to take the last treatment available (immune system suppresant) which caused cancer and he passed. It was a hard road for everyone.
I was diagnosed with CIDP by my neurologist. I’ve had 15 IVIG treatments with no improvement. Got a late start 1 1/2 years due to neck and back surgery. They thought that was my problem. But it wasn’t. My condition seems to get worse after IVIG treatment every 2 weeks. Getting PT 3 days a week. Stuck in recliner can’t walk no balance loosing voice no strength very weak. Feeling helpless. What do I do. Dr said give it time.
Hi I have problems starting with my right leg since March last year losing movement ,and now the left leg is the same,they both have feelings in them.my dr has confirmed I have MND and I’m permanently in a wheelchair. As I don’t have any problems and it’s hard to believe as all the test I have been through has no issues concerning this MND...my feet are swallow And when I get in bed at night legs heat up and I have to get up in night.would say this is sign CIDP.? Thanks Ray
I cannot find anything on MADSAM. My boyfriend just diagnosed. Lost over 125 pounds of muscles. Hes not sure about treatment. If he doesn't....can he lose his life?
We are so sorry to hear - MADSAM like all of our conditions are not fatal if treated. Please reach out to us at info@gbs-cidp.org if you would like to be connected to local resources.
8 years later of this video I am diagnosed CIDP. I am 32 years have always been active doing sport and gym. The woman described all I have been going through except that I have no problem in my arms. To be honest I cried so much due to how dramaticaly my legs were getting weak. Now that I began therapy I am glad that this video gave me hope that I will work and run again! Thank you very much!
Jenny flora ..how are you now ?
This was put together in a perfect way for everyone to understand.My husband diagnoised with CIDP in Febuary 2012 .currently using IVIG every 2 weeks for about 6 weeks now,after a initial3 day treatment in Febuary.He was put on 80mg steroids after a relapse in march.In August started to have weakness and tingling again and had to stop work.(mail carrier)Having great results with IVIG .also a immunosuppresive.down to 30 mg steroids daily.Hoping to go back to work Middle of Oct.Thank You Jesus!
I'm 16 years old, and I got diagnosed with CIDP about 5 months ago. I tried a treatment called IVIG. But no luck for me, then I got prescribed Prednisone. It made a difference dramatically. I can run again, I can go up stairs with out holding on to anything, and jump a little bit. I just want whoever has CIDP to know that there is hope, and to look forward to getting better.
-Sincerely, Renn Balzly
renn balzly
Really? I’m the wife and I’ll try to be polite as you wouldn’t want my CIDP wheelchair bound husband who did IVIG that gave him a heart attack to respond to your bubbly filled with hope comment. He’s been to two of THE best neurologists in our area but to no avail. Are you absolutely or your Neurologist certain that you had CIDP?
Keep up the great outlook, Renn!! We are rooting for you!
renn balzly I’m also on Ivig and have cidp too and after 2 and a half years and many tests and blood work and many different specialists I finally know what’s wrong with me
Hi Renn, how are you doing now?
Paula Hughes , hows you husband doing now?
I’m also in a wheelchair due to server CIDP.
Thanks Bill
Thank you this did remove a lot of thre mystery. After a long search I think this is my diagnosis.
My father was diagnosed with CIDP about 1997 at 59 years old. He was treated at Wake Forest University (Baptist Hospital) and went through all of the listed treatments included in this video. Unfortunately, the treatements did not work and he was completely chair-ridden and unable to care for himself. With such a poor quality of life, he decided to take the last treatment available (immune system suppresant) which caused cancer and he passed. It was a hard road for everyone.
Top notch acting by the patients
I was diagnosed with CIDP by my neurologist. I’ve had 15 IVIG treatments with no improvement. Got a late start 1 1/2 years due to neck and back surgery. They thought that was my problem. But it wasn’t. My condition seems to get worse after IVIG treatment every 2 weeks. Getting PT 3 days a week. Stuck in recliner can’t walk no balance loosing voice no strength very weak. Feeling helpless. What do I do. Dr said give it time.
Good, thanks
Does ALS ever mimic CIDP or vise versa? What are some key differences between the two?
Yes, they do mimic each other, that was the first thing I was tested for was ALS.
Hi I have problems starting with my right leg since March last year losing movement ,and now the left leg is the same,they both have feelings in them.my dr has confirmed I have MND and I’m permanently in a wheelchair. As I don’t have any problems and it’s hard to believe as all the test I have been through has no issues concerning this MND...my feet are swallow And when I get in bed at night legs heat up and I have to get up in night.would say this is sign CIDP.? Thanks Ray
Like I said, same thing, as multiple sclerosis they’re renaming it to get more money
I am suffering from cidp
I´m taking IMURAN and ALA, not mentioned at this video. Also I was diagnosed by blood antibodies testing, not lumbar puncture.
Same damn thing as MS they rename it
I cannot find anything on MADSAM. My boyfriend just diagnosed. Lost over 125 pounds of muscles. Hes not sure about treatment. If he doesn't....can he lose his life?
We are so sorry to hear - MADSAM like all of our conditions are not fatal if treated. Please reach out to us at info@gbs-cidp.org if you would like to be connected to local resources.