Hi, I was diagnosised wit CIDP in January of this year and it has been a rough yr thrust far months n rehab, weeks of hospital stays, failed Ivig treatment the works. However now the doctors n I seem to have the cidp under control but somewhere between hospital stays and rehab I developed drop foot. I’m only 23 n now im forced to walk with cruches and braces everyday just to get around. Has this happened to anyone eles? I’m afraid I won’t fully recover from this drop foot n have to live like this the rest of my life.
Yes, I had drop foot and sometimes it "flares". I corrected it by wearing a high-top sneaker when I went to bed at night. It kept my foot at a 90 degree angle. I tried braces and different devices that didn't work, but the shoe did. It stretches the ligament out during the night. Try it, you have nothing to loose. I've had CIDP for 24 years this December. I've tried about all of the treatments and it went into remission with time. But it flared last Dec. and has yet to go back into remission. Good luck!!
My guy just started standing and walking with a walker and has built up heels to lengthen his Achilles. They shave off the heel piece as the tendons lengthen. Drop foot is present in both feet. Some one sent me a link for a electric stimulating cuff called Bioness that eliminates the brace. I believe it has been Medicare approved and is sold from Montreal and California… I looked it up and it looks like a possibility. We now keep all covers off his. Feet with a bed cradle. Keep at it I see many who have overcome drop foot in rehab and you have youth on your side. Keep positive and strong.
Hiya. I was diagnosed with CIDP at the age of 5 years old and since then I have had two constant foot drops with no movement in either foot and no feeling. I am now 23. I wear bilateral splints 24/7 and without them I am unable to walk. Unfortunately I do not have the best health care so I have to get through this with the support of my loved ones. I also have been on all the treatments there are for CIDP and not one of them has been a success. It’s interesting to know that you are the same age as me and are suffering with CIDP as I have found through my own research that the majority of sufferers are of an older age.
Thank you all for your responses. I do have night boots to wear to sleep but I find them very uncomfortable. However if they will help I’m going to start wearing them every night. The braces I wear are great but after 2-3 hours they start to be so painful on my feet. Have any of you experienced that? The braces really improve my walking but I’m afraid I’ll get skin breakdown if I wear them to long. I’m going to try to stay positive n hope I over come this.
Hi Minh, I have had CIDP for 5 years. I have drop foot and I’ve been going to weekly physical therapy for all of my 5 years. That’s helped me a lot. I have tried everything you can think of to help with the symptoms of CIDP. This is something I am still having to learn to live with. Being positive is hard but helps a lot.
Now I have started walking with a cane after a relapse that happened almost a year ago. My latest problem is the shaking in my hands. Has anyone else experienced these tremors? What treatments have you tried and have they worked?
Stay positive,
Maria
Maria, I have the shaking in my hands too. It started with only my left hand, but now I notice it in my right hand. It happens when I try to use my hands to do some fine motor skill, like picking up something small, or trying to turn or separate the pages in a book or magazine. At first, I thought it was a side effect of the gabapentin, as tremor is listed as one of them, but my neurologist said that the gabapentin is supposed to help the shaking. Do you take gabapentin or lyrica? If not, maybe one of those will help. I do remember reading of others that have hand tremors. Lucky us!
Paula
MSakkis said:
Hi Minh, I have had CIDP for 5 years. I have drop foot and I’ve been going to weekly physical therapy for all of my 5 years. That’s helped me a lot. I have tried everything you can think of to help with the symptoms of CIDP. This is something I am still having to learn to live with. Being positive is hard but helps a lot.
Now I have started walking with a cane after a relapse that happened almost a year ago. My latest problem is the shaking in my hands. Has anyone else experienced these tremors? What treatments have you tried and have they worked?
Stay positive,
Maria
I use the DorSi Lite Brace With Good Oxford Shoes (SAS Are Light & comfortable) Rather Than AFO prescribed by ortho When My Drop Foot Thought To be Caus By Back issues. Also Good DOrsi Brace To Keep Foot At 90 Degrees While Sleeping, Showering ETc.
Msakkis so have you over come ur foot drop? Do you use any assitent equipment? My doctors won’t give me a time line for recovery of my foot drop so I’m just trying to figure it out.
Hi Minh,
I haven't recovered completely the foot drop, I'm about 75% recovered, but I'm still doing daily a lot of exercise.
Thank you very much Paula for your suggestion but I'm allergic to "LYRICA" and I have tried Gabapendin in the past and have not helped, right now I'm doing Acupuncture and also taking PRIMIDONE and see a slight improvement, in the recent past I could not eat on my own, but lately I manage eating by myself.
Hang in there and think positive every one, things are going to get better.
Maria
I am 60 & have cidp and have footdropin both feet. I wear Ottobach braces and they work well. My dr said mine will not get better, because I had cidp too long before I was diagnosed and treated with ivig. If u haven’t had cidp too long urs might be temporary. Good luck.
Trying out wearing high top runners at night. Frustrating
Hi,
I'm so glad you brought this up, I did try to open a discussion.
My feet have totally collapsed over the space of 6-8 months. I am in orthotic-filled trainers all the time. My feet look completely deformed and I cannot believe how fast it has happened. I don't relish thinking of the future.....
Has anyone else experienced a very fast process like this?
My guy wears a built up heel on his shoes to lengthen his tendons. He also has a blanket cradle to keep weight off his feet and wears runners to bed. It happened quickly within 5 months as well. Does it improve…ever?
I am curious as to what the first symptoms of foot drop are. My first symptom of the at the time undiagnosed cidp, was left toes crunching up, then came all the other symptoms. Now it feels like my left foot needs stretching, does this sound like the beginning of foot drop? I have had cidp for almost 2 years and have been getting ivig. My doctor is looking into rituximed because I also have ant-mag. peace Nancy