I was diagnosed with CIDP on Jan 18, 2006 so I am pretty new to this. But I have found a wealth of support and information in this forum.
I see Dr. Garreth Parry in Minnesota at the U of Minn. Neurological Clinic. Dr. Parry is the best. At least for me.
I have improved immensely due to his protocol of steroid use. I take a high dose of methlyprednisone one day a week.(for about 3 months – then he lowers the dose and you come back in three months and so it goes) The results were amazing even with the first dosage. But I must admit that the treatment is pretty rough on me. It takes me 3 to 4 days to feeling strong and alert. Though I still try to get out of the house. Before I had to stop driving but I can drive now. My endurance is very low and I can stand on my feet for no more than 10 minutes because then my knees start to go out. I fear they may be permanently affected. I am not complaining about the steroid treatment I merely state the truth of how I feel and react. I get really off the wall about 2 days after ingesting the weekly dosage. Yikes. Cranky, too. But though the cure seems to be worse than the illness (Parry’s remark) I am very grateful for the progress I have made. I mean, I am walking with just a cane and I can take a shower all by myself. (I formally needed my oldest son to help me with my hair. I didn’t have the stength in my hands to put any pressure on my hair with the shampoo and he was a professional gem doing that for his mother. I am so proud of him. It is wonderful when your family supports you in ways that you never think they would tolerate. My husband had to dead-weight lift me 3 times and I am obese. Really. 265#. He is a strong man. I love him.
Things are much better for me. I use a cane when I go out in public…mostly for balance and sympathy…Hah.
But, of course, I must use the riding carts at Cub or Wal-Mart. Endurance is a huge problem.
Hope you are getting the support and info you desire. But I just wanted to share a little with you. Things will get better.
Best of my heart to you.
CIDP Jan 2006