AnonymousJuly 25, 2006 at 6:43 pm
My husband’s doctor thinks he might have CIDP. The results from his spinal tap came back with elevated protein. The doctor is still waiting on some other test results. I have an idea of what this disease is, but I’m not sure of what the outcome is. Can this ever be cured or do you have to stay on the treatments the rest of you life?
AnonymousJuly 25, 2006 at 8:30 pm
I have been diagnosed with possible cidp. I have been told that this disease is different for everyone. Some patients have progressive symptoms, some have symptoms sporadically, and some have relapses. There is not a cure per se. I am going to start a treatment called IVIG therapy next week. It seems to be the gold standard treatment. After the initial treatment phase some patients have to keep up with ongoing occasional treatments to maintain their level of relief. I have also been told that some people have to use steroid medication. There is a great website I use. It is:[url]http://www.cidpusa.org[/url]. I hope this helps.
AnonymousJuly 25, 2006 at 10:27 pm
I have CIDP and had a moderately severe onset and I am doing quite well. If it does turn out to be CIDP/GBS it sounds like they have caught it early with your hubby and can begin treatment right away. Hang in there and keep coming back, we are happy to help however we can.
AnonymousJuly 25, 2006 at 10:44 pm
My husband, too, was diagnosed this past year with CIDP and HSM type 5. (don’t even ask) Tonight we are experiencing together some side effects he had on round 3 of IVIG. I am looking forward to hopefully getting to reap some benefit soon- was reading other postings which hint at success in our future.
I only wish there was a special place for us spouses to go to to unwind and draw strength from each other- watching the love of your life go through CIDP is the most challenging thing I have ever gone through- apparently God felt I needed to build more character!
Good luck to you all. Our family slogan, which I share with you, is
AnonymousJuly 26, 2006 at 9:27 am
Excellent information is available on the UK GBS Support Group site.
[url]http://www.gbs.org.uk/info/cidp.htm[/url]. Good to print out.
If you have Adobe Acrobat then it is also available in pdf.http: //www.gbs.org.uk/info/cidp.pdf
As a CIDP contact person I am presently visiting a lady in our local hospital diagnosed with CIDP a few weeks ago. The family has been thrilled with the help available, especially those listed above.:)
AnonymousJuly 26, 2006 at 4:45 pm
Welcome to the Forum. You’ll find much information on this part of the forum, and feel free to ask for comfort and unwind on “Daily Delights” and “Vent Your Frustrations Here” on the Main Forum too. And if you go down to the bottom of this page you will find a list of all parts of this site at “Forum Jump” – there is a Forum for Family, Friends and Caregivers too.
AnonymousJuly 26, 2006 at 7:17 pm
You can post here anything that is on your mind, no one will ever fault you for any feelings good or bad. So go to the Caregivers section and vent away.
My husband Frank had GBS first then after he kept declining he was given the DX of CIDP, he struggled with it for 6 long years and passed away from a heart attack.
Many, many patients overcome the illness, but most will always have residuals from it, like extreme fatique, drop foot, chronic and severe pain.
If you need to talk e-mail me through the Foundation which you can find in my profile. I’d be glad to talk to you anytime.
AnonymousJuly 27, 2006 at 9:46 pm
Thank you friends for the help, suggestions, and redirection. I will explore the rest of the forums too. We are up all night tonight with round 2 of IVIG- had difficult reaction the other night. Apparently, our neurologist forgot to tell us that premedication was in order- and I learned this through this forum- seems tvo be working so far. Supersij
AnonymousJuly 28, 2006 at 6:15 am
I’ve only had one treatment, and I had reasonable success using Benedry, Tylenol and drinking large (!) amounts of water. My neurologist also has me taking a small baby aspirin every day. On my own, I decided to forego caffeine and alcohol, as both are vascular constricters. Quitting coffee was hard, but its been a month now and its becoming my new norm. I’m a week out from my first treatment, and I still have the occassional headache which I “treat” successfully with water. Best wishes to you both!
You must be logged in to reply to this topic.