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Living with Polyneuropathy CIDP, GBS, & CMT

Foot Drop


#1

Does anyone have foot drop with CIDP that resolved itself? I was my first symptom.

I have had 2 round of IVIG of 4 days and have had a significant strength improvement in my legs and less pain grateful for that,,,but foot drop not improved...Doc. says we are early in treatment so of course cannot predict if FD will gets better. Have AFO which helps a lot. Thanks for your reading.


#2

I had foot drop and on several occasions from relapses. Now I can run. It takes time. I used a wheel chair when my ankles were super weak. Maybe that helped them rest more than AFOs. Can't say for sure but I was always careful not to overextend myself to point of additional pain or weakness.


#3

Thanks for your response. I have had an MRI of my lumbar spine and two consults with spine specialist They were the ones who referred me to Nero Doc. because my MRi did not show anything that would cause FD. I posted this on a face book CIDP page as well and got responses both that foot drop had resolved and that it had not..again only time will tell.


#4

My ivig is Carimune..dose is 500mg/kg daily for 4 days once a month.

I will have another EMG after doing this for 5 months so will get more info then.

Yes patience and being grateful for what I have..like still being able to walk in spite of foot drop. Just hard sometimes to not be able to just get up and go like I did a few months ago....but keeping up hope for myself and all of us CIDRers.


#5

Thanks for your words of encouragement..they are much appreciated. Love the photo and I do try to keep my eyes open for the beauty around me.


#6




raven7 said:

My ivig is Carimune..dose is 500mg/kg daily for 4 days once a month.

I will have another EMG after doing this for 5 months so will get more info then.

Yes patience and being grateful for what I have..like still being able to walk in spite of foot drop. Just hard sometimes to not be able to just get up and go like I did a few months ago....but keeping up hope for myself and all of us CIDRers.


#7



raven7 said: Thanks for your words of encouragement..they are much appreciated. Love the photo and I do try to keep my eyes open for the beauty around me.




#8

motor neuron deficits (weakness that originates from deymlination ) can SOMETIMES be mediated by IgG infusions and strength can return, in part, usually not in whole. if you have axonal damage to your tibial nerves and other nerves from CIDP (which may be the cause of your foot drop) then you are probably stuck with FD ... if you had undiagnosed CIDP for many years and you are over fiftyish you're probably stuck with the foot drop.

But - everybody and body is different.

I also wanted a foot drop cure and still do. If you have an EMG that indicates you have some action-potentials (motor nerve signals) reaching the dorsifexion muscles then get physical therapy and CIDP treatment. I've been told by my certified physical therapist that with VERY hard work I may regain a small percentage of use of ankle. After a year of applied and extreme focus on motor nerve regeneration on the dorsiflexion nexus, I have only gained one millimeter of upward movement. Still, one never gives up, do they?

I exercise— if I listed my routine it would probably tire you out just from reading it, LOL— BUT, when I experienced severe relapses or other health disasters, I am then prepared with a body of steel and fortitude to carry me through it. You need to do this to survive CIDP, as it is a PROGRESSIVE motor neuron disease, as it is a PROGRESSIVE motor neuron disease, as it is a PROGRESSIVE motor neuron disease. Get my drift?

I also wear an AFO, going on two years. My AFO is custom built, cost $1300 and pretty much put my misaligned body back together again. HOWEVER, the AFO also weakens other supporting muscles in my ankle, which just happened to be the muscles with the least amount of action-potential activation from axional damage at the motor neuron junction in the spine... I have groovy MRIs showing inflamed nerve roots popping out of my spinal column at L4-L5, S1 and at the clauda equina (which is responsible for my impotence, bladder and bowel dysfunctions, not my foot drop).

BTW- motor neuron are signals sent DOWN from the brain (or from the motor neuron junction in the spine) to muscles for movement/strength. Sensory neurons send signals UP to the brain (or from the motor-neuron junction in the spine)

To tell you the state of your world, then you evaluate this sensory information to function and have fun... Or you then remove your scorched hand, yell as you smell the burned flesh on your hand that you accidentally put on the stove burner, etc. It is a primitive survival system... The nervous system is almost indestructible and of a construction to last a lifetime

Unfortunately, many of us just happened to be kicked by the unlucky leprechaun of fate to contract CIDP or one of its variants

Many people on this site get confused about this: motor neuron signals GO DOWN, sensory neuron signals GO UP. CIDP is a motor neuron disease, perhaps from this you can extrapolate and realize that CIDP begins with the word, CHRONIC, and I've discovered that CHRONIC means: 24/7/ to my infinity. Or, until I get a shot at HSCT... when cows fly!

Of course, CIDP has variants and since we are all variants on the template of human, reversal is possible, but probably not if you're over 50ish.

BTW- after a year or more on this site I've heard of only a handful of total remissions and most of those people were under 30ish.

READ. READ. READ. Most college neuroloogy course ( on line and free) cover all you need to know. What I've learned here?... Not to keep denying that I have a progressive and chronic disease.

I get 240 grams/month of IgG and 100 mg of Azathioprine. Going on 80 infusions over 23 months. Getting better? Guess.


#9

Thank you for sharing. I have been receiving IVIG treatments for 6 years. My condition isn’t quite as advanced as yours, but I realize it has & will continue to progress. Three months ago I developed drop foot on my left foot.Two months ago I had a second laminectomy (previously done 14 years ago - I am 71), and removal of scar tissue leaning on a nerve, with a degenerated disk at L4 & L5 level. Recovered nicely and am playing golf. Experience advanced neuropathy in my feet and moderate neuropathy in my hands. I’m a lefty, but now my right side is stronger than my left. Use a bee wax cloth on my hands to help hold onto my golf clubs with super sized grips. Have had two hip replacements, 3 rotator cuff surgeries, open heart surgery (congenital heart condition and the 2 back surgeries. Go to PT and “over” work on balance and strengthening ankles, feet and hands. When I overdo everything and at times pay for it with fatigue, pain and what I refer to as “zingers” of pain in my feet. Have trouble feeling which pedal is the brake or the gas when driving. I have to really concentrate on my feet for safety all the time. However, for those reading my email, know I feel great, positive and determined to work at being the best I can be. Esteban correctly states this is a chronic condition and everyone has individual challenges with the disease. Let’s pray for a cure some day. But Estaban confirmed what I already knew; accept what you have, be the best you can be and enjoy your life.


#10

My foot drop was the result of GBS and I am wearing day and nightime braces and special shoes to correct it. I also attend physical therapy 4 times a week to address that as well as to re learn to walk from the GBS


#11

I also receive IVIG 2 days a month and am on over 10 daily meds including lyrica, 3 anti inflammatory drugs.


#12

Yes, i had foot drop 6 months after coming down with cidp. It comes with intense burning, pain, swelling in the feet. This was before i was diagnosed with cidp. I went to an orthopedist who was a foot specialist. He put me in a cast for improved walking control and 4 to 6 months of physical therapy. It was slow at first but after about 4 months of therapy, it became functional again. Go to a good orthopedist, get a brace, and do Therapy. It will come back. It got better eveb while my cidp was woesening because i did not yet have a diagnosis. Have faith and so the needful if you want it to improve. Best of luck, Anne