AnonymousDecember 2, 2007 at 1:17 pm
I have CIDP, have had for over 1 year. First symptoms were my toes wouldn’t bend or move. They still don’t! I can feel them when they are touched or if I manually move them with my fingers.
Has anyone else had the same thing?
Now the bottoms of both my feet feel waxy/numb?
They are very tight feeling and I am afraid that they to are starting to become paralysed.
I move them around by rotating my ankles but they just don’t feel right.
I have IVIG about every three months, take Gabapentin 600 x three times a day.
I am going to family Doc on friday for an update and to determine if I should stay off work and apply for long term benefits.
Anyone have any advise, my ears are wide open!
Thanks for being here for me once again
AnonymousDecember 2, 2007 at 1:46 pm
[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]
AnonymousDecember 2, 2007 at 7:16 pm
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.
AnonymousDecember 2, 2007 at 8:17 pm
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
AnonymousDecember 2, 2007 at 10:54 pm
Thanks for the messages and advise. I have a very good neurologist, both him and my family doc have been excellent. I can have the IVIG whenever I want. Not knowing what to expect is half the problem..the pain has been decreasing each time I get IVIG. I have been living in pain since the beginning. This past week after having IVIG closer together is when I noticed the pain is gone! I am now facing the fact that the bottom of my feet are numb like my toes. My toes haven’t worked for over a year now. I move them everyday and go to reflexology once a week.
I go see family doctor on Friday so I’ll let you know what the outcome is.
AnonymousDecember 3, 2007 at 7:19 am
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.
AnonymousDecember 3, 2007 at 9:53 am
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.
December 3, 2007 at 11:21 am
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
AnonymousDecember 3, 2007 at 12:33 pm
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.
AnonymousDecember 3, 2007 at 2:22 pm
What can I say but a huge THANK YOU to all of you that have responded!
I will discuss moving IVIG closer together with my Doc and I know that I am not alone in the toe issue.
I feel part of a “Normal” group.
Trying to stay warm it is -30 and snowing like crazy…walking on bare road is tough enough. This snow should make me walk like a duck!
AnonymousDecember 3, 2007 at 5:07 pm
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.)
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