I have gone from being quite active – playing tennis and hiking and traveling all over the world to walking with a cane and having a very hard time going up and down stairs. I’ve pretty much lost the feeling in my feet, hands, lower legs and my legs are extremely weak.
Anyone out there diagnosed with CIDP and how are you coping? What has your treatment been and how effective has it been. How long before you saw results (if you did)….
Greetings,iwas very active, doing plumbing service in Ct. covering most of the state. In a nutshell,it goes like this: 2x cataract surgery in May/June 06; Heart attack & stent insertion July 06; numbness in feet immediately after attack; moved to Tenn. in Oct 06; lost ability to walk Dec 15, 06: bedridden Jan 07; completely bed ridden ( unable to even turn) by Feb 07. Diagnosed in Mar 07. Tried IVIG therapy and some other infusion therapy, no luck. Doc finally put me on Prednisone (100 mg)daily , which i didn't care for. At the same time, I was hosp with severe instestinal blockage,(related) had minor surgery and placed on IV of new antibiotic for 3 days. On day 2, I could touch my fingers together, and so on. Progress has continued, and in Aug 08, I started using a walker, then a cane, and now on my own. Not completely stable, but I can walk.Be patient and learn to rest......Oh yeah, I'm dow to 15mg Pred every other day. Still have the moon face, swollen stomack and legs, an extra 40 lbs, and shortness of breath, but I am walking and leading a different life, mbut I'm here.
I too have been diagnosed with CIDP, but never got to the stage that you have. I am walking with a cane, but no worse than that. I am on 70 mgs of Prednisone a day - what side effects have you had from your 100 mgs a day? I see my neurologist this Friday as there hasn't been any progress yet since I started taking the prednisone about a month ago. I was on IVIG for 4 months and that didn't do anything for me.
I too was quite active before all this started - hiking, tennis, etc.. but now, the thought of going up the stairs is a killer.
Good to hear you are back to walking. Hopefully it will get better each day.
It is great when someone finds a drug that will work. I do much research they say we should all be on an antibiotic before any other treatment. Maybe there is something to it.
SUES
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