Hello and new to CIDP
AnonymousNovember 27, 2007 at 2:17 pm
[SIZE=”4″]Have just been dx with CIDP. Have lived with symptoms last 6 weeks. Have had a week of IVIG. Now on high dose, 80 mg of Prednsione, 2000 mg of CellCept, and 20 mg of Arava.
Just wanted to be in touch with others that have CIDP and find out how they are coping and what works best.
I’m using a walker part time and movements are very slow and unbalanced. Arms from elbows to fingers are numb and tingling. Whole body feels like it gets zapped at times.
Welcome all comments and insights. [/SIZE]
AnonymousNovember 27, 2007 at 11:25 pm
hello, I was diagnoised with cidp in june (after a relaspe from gbs in april). I did 15 or so IVIG therapies (two diff stays in the hosp), physical theraphy and occupational theraphy. my last hosp stay my dr tried plasma exchange since the ivig only work so far on me(I never could get over the hump so to say). I had 7 PE in the hosp and 8 after. I am now sch for pe every other week. I also take 10 mg of prednisone (from a high of 60 mg–my dr is tappering me down) 150 mg of Imuran, 40 mg of Oxycodone and 20 mg of Elival. I have been off work since I was diagnoised in April. It has been a long and hard road. I used a walker from April-Sept. I was able to begin using a 4 prong cane after my 3rd PE in the hospital. I now walk up and down my stairs w/o my cane and I walk around my house w/o it as well. I still use it when I go out (it’s my security blanket). I was fairly healthy and exercised 4-5x a week before I got sick. I just knew I would bounce back like right away. I have learned one thing and that this disease requires you to be patient and to enjoy the little improvments you make everyday.
Good Luck and take care
AnonymousNovember 28, 2007 at 8:50 am
I was diagnosed with CIDP in sept., spent 10 days in hospital then 3 1/2 weeks in rehab hospital. My neuro. immediately ran 2 bags of IVIG then switched over to a solumedrol infusion starting with a gram a day for 5 days and now is running 500mg twice a week.
When I first went to hospital my hands and feet were tingly/numb and was basically paralyzed from the neck down. Came home from rehab. I could walk short distances with a walker but was more or less confined to a wheelchair. Today have put away the walker and cane and am walking almost a mile a day and have started strength training to help get my arms and legs back into shape. I think I was very lucky in that my neuro. specializes in CIPD/GBS and MS, and the rehab. techs all have worked with CIDP/GB patients so they knew just how hard to push and when to quit and were able to teach me the warning signs of pushing too hard.
I think the most important things to keep in mind while recovering from this thing is keeping a positive attitude and the ability to know when you are pushing the envelope too far….your body will tell you when to stop and if you push it too hard it will rebel and you will slide backwards.
Just remember that patience is the key to dealing with all this because you cannot force the nerves to fix themselves any faster no matter what you do, and you have to be able to accept whatever your new reality will be and be willing to work with it as best you can because the odds are very good that this will be with you in one form or another for many years to come. Also feel free to ask questions, this site has a ton of information and as near as I can tell has the most informed people around about dealing with this thing.
Good luck and take care
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