paralyzed/frozen toes

[SIZE=”4″][COLOR=”Black”]I was dx with CIDP about 6 weeks ago. It started with my feet being totally numb,tingling, and pain. I could move my toes, my but feet felt dead. Like when they go to sleep and will not wake up. It progressed to my knees and than from elbows to fingers.
I’ve had one week of IVIG and now am on PRednisone 80 mg a day and CellCept 2000 mg aday and Arava 20 mg a day.
I’m doinmg stretching exercises on my feet and toes 2 to 3 times a day. Not sure if it is helping, but it causes pain on occassion so I think it is helping.
Am also starting PT this week, as I find it very difficult to walk. Am using a walker part time. [/COLOR][/SIZE]
[SIZE=”4″]Just wanted to say sorry this is happening and we are here for you. Please keep us posted.
I go to two MD’s this week to discuss further treatment.
I find this a scary disease. I have to remind myself I’m more than this body that isn’t working and that God will get me through it.[/SIZE]

Why are you getting IVIG only once every 3 months? Most people get it about every 4 weeks. Your symptoms are progressing & that means that the IVIG is not working to control the CIDP. I would suggest talking to you dr about doing IVIG more often. I would start with a loading dose of 2kg per gram for 5 consecutive days then start off with IVIG once every 4 weeks to see if that works. If it doesn’t work then you may consider moving your infusions closer together for awhile.

The dr could also suggest putting you on a steroid or other immuno-modulating drug & not just the IVIG.

You may want to also consider getting a little bit of physical therapy. I wouldn’t consider going on disability because you CAN control the CIDP if you are on the right meds at the right frequency. Sometimes it takes awhile to figure that out.

Your family dr should not be the one that you see for your CIDP. You should have a GOOD neurologist.

Good luck,
Kelly

rhonda,

kelly is right. you should be seeing a gbs neuro. an emg/ncv will show if your feet are getting worse or it just feels like it to you, but they prolly getting worse. you want to increase the ivig B4 going to steroids cuz of their bad side effects. take care. be well.

gene gbs 8-99
in numbers there is strength

Rhonda,

I can completely relate to the frozen/paralyzed toes. My toes dont move either. When it all first started…which I dont know exactly when the worst of it hit…but somewhere around 18 mos ago, it was only one foot. My toes were numb. Then it went to numb and frozen. I cant spread them or bend them on either foot now. Nor can I feel them. It went to the other foot very fast as in all toes becoming stiff but didnt affect it until about 6 mos after the first foot. Now they are equally frozen. As strange as it all is…once in a while I CAN bend them a bit or wiggle them a bit…but, most of the time they are “stuck”. The last three toes on the first foot affected are now beginning to curl. I can manually move them and straighten them, too…and they feel stiff when i do that.
I can feel some areas on the bottom of my foot but nothing on the toes…touching…but, i can feel pressure.
I am going to Pt now…not helping the toes but suppose to be helping the extreme tightness of the ankle muscles and calves. Whatever. We’ll see.

good luck and always remember to check your toes for cuts or sores…my prob is the back of my ankles from shaving my legs….I ALWAYS gash them terribley. I dont feel it and dont know it until lots of blood is going down the drain in the shower.

best wishes.

Stacey

When my CIDP hit in March of 2002, my feet went very rapidly (as did everything else.) But once my CIDP was arrested in 2003 I got back most of the feeling in my body, except total feeling below the knees, & I still have some numbness in my hands. But my feet are by far the worst, haven’t moved my toes since April of 2002; don’t have any feeling in them either. But I still walk, with AOS, & don’t think about them anymore. But I know that is the reason I have virtually no balance.
Pam

Hi Rhonda,
We go to the doc tommorrow to figure out Kevin’s ivig schedule. He is not at the level of disability you are and we are going to at the very least, do ivig every six weeks full loading dose. We may even do it once a monthe for the first six months. We will know more tommorrow.

Also, ivig has a full life of 42 days, if you go beyond that, you allow more damage to occur. Some people even need it more than 30-42 days in between. It all depends on your progression.

Since your doctor is willing to administer ivig, TAKE it! Some doctors are not as aggressive, many people on the site fight for ivig! I am so glad you have your doctor on your side!!

DAwn Kevies mom

Hello,
I was diagnosed with CIDP in 1998 and I still have hardly any movement in my toes, though they do wiggle just a little bit. I also have very little forward movement in my feet. For me, this will probably always be.

I think you should try having the IVIG’s closer together for a long enough time to find out if that helps you. I did well with one day every two weeks.

I know where you are coming from, as I live in northern MN. We got a foot of snow this weekend & it has snowed another 3″ inches today. When we ran out to run errands today I wore my AFOs as usual & used my cane. It works, but the AFOs sure do get cold! I do still love the snow, however, as we love to snowmobile (for obvious reasons now, skiing & skating are out.)
Pam