Father recently dx with CIDP, have lots of questions
AnonymousOctober 6, 2006 at 6:03 pm
My father was recently dx with CIDP, he is slowly recovering but is starting to think he might not recover at all. I have so many questions. Mainly I really would like to find a support group out there for him. Someone that can relate. I am a registered nurse, and I feel helpless. (this whole forum is obviously new to me also) HELP.
AnonymousOctober 6, 2006 at 10:55 pm
You have come to the right place. This site is a great place for your father to connect with others who can relate to his situation. It’s also a great place for family to come to learn more about the disease and get information about care and any other concerns.
Best wishes and we’ll look forward to hearing from your father.
AnonymousOctober 6, 2006 at 11:49 pm
I hope you come here often & ask a lot of questions. Many of us have been on the Forum for a long time (for me it has been 4 years), & with that we have read thousands of posts on various issues. Also, we have experienced much of what your father is going through. I came down with a very severe case of CIDP back in March of 2002. It was so quick & I was so immobile that my originial dx was GBS. I would be glad to help in any way possible…
Also, there is always the option of private messinging or private emailing any member just by clicking on their name, which takes you to their profile. There is a link on that page giving you the option to send a private message or email. If possible it would help out a lot if you could give us his current condition, as well as what treatments he has tried. Also, it is very important to keep the pain level down, as that is what got me down the most. If he has neuropathic pain caused by damaged nerves, he should be taking neurontin, or the generic form gabepentin.
Please come back & tell us more about your father. Just click on Post Reply & type away. Some of us “old-timers” stay on mainly to help people new to the illness. I doubt that there is really much more I could learn about it, I am sure I probably know more than most doctors by now.
AnonymousOctober 6, 2006 at 11:56 pm
Sometimes it’s difficult to find a support group in your area so that you can connect one on one in person. I have no support group in my area, so this forum is my support and my family. If you have any big hospitals in your area, you could call them and ask if they have support groups or if they have other patients with CIDP you can connect with. Another thing you can try, is to find and call a home infusion clinic. They may have one or two patients with CIDP.
We should NEVER give up, because we do have HOPE, it takes a long time though, months to years, rather then days to weeks. Come here when you need someone to talk to because we feel what your dad feels and our caregivers feel what you feel.
AnonymousOctober 7, 2006 at 8:06 am
Everyone here has given you good basic advice…..come back with quesitons anytime and as often as you like. GBS is difficult, at best, for most people to understand. It takes time and by time I mean more than just a few weeks to overcome. Patients and rest are the 2 best medicines.
AnonymousOctober 8, 2006 at 2:44 am
Read a lot, and learn as much as you can. I am sure you are doing that. Keep his spirits up and keep things positive. You didn’t say how his CIDP attack was, in terms of severity, but I know ANY damage is no fun at all.
Lots of people make recovery. Remember, CIDP is Chronic, and may flare up again, even after recovery. It gets frustrating, having to deal with the continual nature of the disease. Frame of mind is so important. You have to deal with the losses, and deal with the changes, and deal with the symptoms all at the same time. Good positive support from everyone else means so very much.
I know that I feel so much better when my family is with me. Those times when I have family “challenges” and tough times, are also the more difficult pain episodes.
I applaud you for trying to find out more, and for being supportive. It does help !!
AnonymousOctober 8, 2006 at 9:50 am
For most of us, these forums have been a lifesaver. Feel free to come and ask any questions, give any comments, or just vent. And print things out for your father or, better yet, get him online with us.
And now for a plug for the UK: CIDP isn’t limited to the USA–we have a good Web site on the eastern side of the Pond, with an online booklet which many people have found very helpful as an introduction to CIDP; it’s at [url]www.gbs.org.uk/info/cidp.pdf[/url]. Feel free to join our forums, too.
Best wishes in the battle,
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