Anon, I'm sorry you're dealing with CIDP. When were you diagnosed? Were you diagnosed after a viral infection or a vaccination? And how long have you been on the progesterone? Has it helped your symptoms?
What happens in CIDP is that your immune system has started attacking the myelin covering of your peripheral nerves. Myelin is a covering that protects the nerves. Without it, those nerves don't react properly to such things as numbness, pain, tingling and fatigue. It progresses slowly and causes increasing difficulty with motor skills and a loss of sensation in the arms and legs.
Cortosteroids like prednisone are used to help the symptoms and ease the inflammation; has it had this effect with you? Often, IVIg therapy is used when that treatment has become inadequate or is not helping.
IVIg stands for intravenous immunoglobulins. This therapy has been used for two decades and it has successfully helped prevent relapses in CIDP patients. IVIg contains antibodies purified from the blood plasma of thousands of healthy blood donors, and it helps the body respond to the inflammation caused by CIDP. It can have side effects: allergic reactions, headaches, fatigue and a risk of infection. Here's a page specifically about the treatment:
http://www.cidpusa.org/P/ivig.htm
It may help you to know that in a study that was published as recently as last year in a neurology journal called Lancet Neurology, IVIg was shown to reduce the levels of disability in patients and to significantly improve their grip strength.
Here's more information about that:
http://www.aan.com/elibrary/neurologytoday/?event=home.showArticle&id=ovid.com:/bib/ovftdb/00132985-200810020-00002
Here's the home page of a website that is just for people who have CIDP or Guillain-Barre syndrome, which is somewhat similar.
http://www.gbs-cidp.org/
They also have a forum where people with CIDP can connect with one another:
http://www.gbs-cidp.org/forums/index.php
And here's the website of the Neurology Muscular Dystrophy and Neuropathy Institute, which has a very good explanation of CIDP and its causes, symptoms and treatments:
http://www.beverlyhillsneurology.com/cidp.html
I also found that people with CIDP can benefit from exercise and massage therapy; is this the case with you? What is the level of your disability right now?
Does this help at all? Do you have special concerns about the IVIg treatment?
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Anon, I'm sorry you're dealing with CIDP. When were you diagnosed? Were you diagnosed after a viral infection or a vaccination? And how long have you been on the progesterone? Has it helped your symptoms?
What happens in CIDP is that your immune system has started attacking the myelin covering of your peripheral nerves. Myelin is a covering that protects the nerves. Without it, those nerves don't react properly to such things as numbness, pain, tingling and fatigue. It progresses slowly and causes increasing difficulty with motor skills and a loss of sensation in the arms and legs.
Cortosteroids like prednisone are used to help the symptoms and ease the inflammation; has it had this effect with you? Often, IVIg therapy is used when that treatment has become inadequate or is not helping.
IVIg stands for intravenous immunoglobulins. This therapy has been used for two decades and it has successfully helped prevent relapses in CIDP patients. IVIg contains antibodies purified from the blood plasma of thousands of healthy blood donors, and it helps the body respond to the inflammation caused by CIDP. It can have side effects: allergic reactions, headaches, fatigue and a risk of infection. Here's a page specifically about the treatment:
http://www.cidpusa.org/P/ivig.htm
It may help you to know that in a study that was published as recently as last year in a neurology journal called Lancet Neurology, IVIg was shown to reduce the levels of disability in patients and to significantly improve their grip strength.
Here's more information about that:
http://www.aan.com/elibrary/neurologytoday/?event=home.showArticle&id=ovid.com:/bib/ovftdb/00132985-200810020-00002
Here's the home page of a website that is just for people who have CIDP or Guillain-Barre syndrome, which is somewhat similar.
http://www.gbs-cidp.org/
They also have a forum where people with CIDP can connect with one another:
http://www.gbs-cidp.org/forums/index.php
And here's the website of the Neurology Muscular Dystrophy and Neuropathy Institute, which has a very good explanation of CIDP and its causes, symptoms and treatments:
http://www.beverlyhillsneurology.com/cidp.html
I also found that people with CIDP can benefit from exercise and massage therapy; is this the case with you? What is the level of your disability right now?
Does this help at all? Do you have special concerns about the IVIg treatment?
February 26, 2009 - 10:06amThis Comment
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