If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
I was just wondering if anybody out there suffered from cidp like myself?
allsmilesJ
Member Posts: 1 Listener
Hi my name is Jessie. Last year I got really sick and found out that I have something called cidp. Past tense for chronic inflammatory demyelinating polyneuropathy. I think I was told that one in 100,000 people get this disease they really don't know what causes it. Usually it starts with the flu shot or flu-like symptoms. At first they thought it was something called GBS but later in the hospital I was told it was cidp. Have yet to meet anyone else with this and I was just wondering if anybody else had heard of it or knew anybody with their or had it themselves?
Replies
I am very familiar with CIDP and GBS (Guillain Barre Syndrome) as I have apparently had/have both. Like you I was first diagnosed with GBS then this was changed to CIDP then back to GBS, now my GP just calls it polyneuropathy, whatever they want to call it it's an awful thing to have so my heart goes out to you and I hope we may be able to help each other as I know how difficult it can be finding information.
When did your illness start and what treatments are you having?
Big hugs Rosie
It is an autoimmune disease where your immune system attacks your nervous system, in short the body starts to attack itself. It can happen to anyone at any age and in many cases comes on suddenly sometimes within a few hours. There is no cure only management of the symptoms that vary widely. Many sufferers lose the ability to stand or walk and need to spend a longtime in care, some people make good recovery and may be left with residual problems while others are left with debilitating nerve damage.
Hope that helps, best wishes Rosie
Senior online community officer
Below is also a link for a dedicated support group that hold a wealth of all the latest information.
http://www.gaincharity.org.uk/
They also have a very good helpline that I have used a few times in the past with very knowledgeable volunteers.
http://www.gaincharity.org.uk/i-need-to-talk/info_35.html
Morning Jessie how are doing?