update on Willie

You will probably hear a different story from each person. Mine started in 1994 and was mostly gone until 3 1/2 years ago. It came back and I am now on permanent disability.

My symptoms are tingling over 75% of my body, numbness in feet, burning in my arms and legs, some loss of strength in arms and legs, and now getting weaker in my legs. It is really difficult to make my legs move sometimes.

But the worst is the fatigue. It is just crushing……yesterday I was in bed or on the couch all day and night. The fatigue is so bad it causes nausea. My neuro has never heard of that, but that’s just the way it is.

I seem to be going very slowly down hill, and nothing seems to help at this point. For me, the neuro thinks that the permanent damage I have is causing the symptoms, so there is probably not much we can do.

The best advice I can give anyone is to enjoy the good days. They are a gift! Remember you are the important one……..

My legs are very weak and i can stand unaided for only 30 seconds. i use a walker and find walking is easier than standing.
Good luck with the disability and card you need to start treatment.

Hi Willie, how are you doing? Are you seeing any improvement since starting Prednisone?

I only had CIDP for about 9 or so weeks before I started the steroids. But my decline, the previous 8 weeks, was a rapid one. I had a cold/sinus infection mid-Oct, then about a week and a half later, I noticed some strange sensations and numbness in my extremities. Within several weeks of the onset of the neuropathy, I had pretty severe muscle weakness. I had it in my upper and lower body. I couldn’t climb stairs and I couldn’t pick up my 6-year old son. Felt like I couldn’t walk more than 100 feet. Prior to that I exercised regularly and would go up and down the stairs two at a time.

I hope things work out with the disability insurance and you get your IVIG very soon.

Willie, I noticed slight improvements in my symptoms almost immediately starting the pred. Within 2-3 weeks, I had improved a lot and could go up and down the steps again without having to use the railing, but the steps were still kind of difficult. Steps are no longer difficult and I CAN go at them two at a time, but I don’t because I am not back to 100%. I think I have about 75-80% of my muscle strength back. I’ve had 1 IVIG treatment so far, due for the next one in two weeks. But I do have days where I feel weaker and more tired than others (feel like I am more at 50% of my muscle strength) and I worry about what is going on. I’ve had a hard time gauging how much the IVIG has helped because the pred helped so much.

I was given a referral for PT, but haven’t used it yet. I just exercise on my own, similar to what I was doing before I got sick. A couple two-mile walks a week, short (10-15 minute), frequent walk-in place aeorobic workouts, and some exercises with dumbells. I agree that exercising if you can do it is more important now than ever. Every day when I wake, I say if I have the strength to do this, I’m going to do this. But I also let myself rest and don’t push myself if I feel tired and crappy.

I am glad you aren’t feeling as wired up on the pred. It made me feel really jittery and irritable and I was ripping everybody around me heads off. I just need to figure how to control my urges to eat. I feel like some kind of food junkie, all I do is think about food. AND my weight looks like it is still going up. I’ve gained about 10-15 pounds, but I am a small person and 10 pounds is a lot.

my strength decreased substantially for the year from onset to diagnosis. Physical therapy was something I had to ask my neuro for. It had not occurred to him as a primary issue as I was still mobile. I felt that my mobility and muscle strength was decreasing based on personal experience and the neruo testing….nerve conduction tests, and reflex tests… I got no objection to getting PT and was offered a number of options. I have been thru 4-5 rounds of PT during my subsequent diagnosis and other issues. All experiences have taught me well what exercises are best for me. Be sure to ask the prescribing doc to include a ‘program for home exercises’ as well. That way you will get a list or routine of simple exercises you can do at home using little or no equipment.
I hope this helps!

Hello Willie.

Like you , I have weak legs with the endurance issues. My balance isnt so good and I get the “foot slap” more pronounced as the fatigue rises. I cant walk distance without the foot slap really getting noticeable. I can walk ok and it’s not noticable until I am fatigued or gone distance. I walk pretty slow b/c I have to be careful to lift my left foot all the way up so that it doesnt drag. I do have an AFO but must admit I dont wear it like I should yet.

My upper body is stronger than the lower…I am weaker in the hands but not too awful bad yet.

I have been diagnosed since Sept 07.
I work full time and have a young child, a husband and very sick mother. I am working my way through all of this on a daily basis.

I did the IVIG and the steroids with no proof that it worked . I had a very gradual decline and seem to be stable right now. Some days I am weaker and slower than others but I have alot of stress right now and I am over tired all of the time. I know that’s not good but I dont have a choice.

I am not able to move my toes and cant feel my feet. I have alot of numbness from the knees down, no reflexes. The lack of toe movement is likely permanent damage and I’ll probably never feel them but not complaining b/c it could be a whole lot worse.

Hutchman had great advice…enjoy the good days.
Stick with your physical therapy b/c that will keep you going. I did PT and worked on balance.
As you will see, we all have different stories with CIDP but you will find some very helpful and friendly people here to pick you up when you need a lift.

well wishes to you…

Stacey

Hi Willie,
What wonderful news regarding the ivig. Just wait, soon you will start to notice a difference, maybe suttle, or maybe with the help of God, EXTREME! I am praying that ss goes well for you too!
Best wishes,
Dawn Kevies mom

Good luck Willie. I will be thinking of you on Monday. Do you have someone who will be going with you? Keep us posted.
Linda