Reply To: Kinda Lost

Your case is not that dissimilar to mine. I, too, was paralyzed, but without breathing impairment. I was diagnosed as GBS, then changed to CIDP. But it doesn’t matter what you call it, because at that stage the treatment is the same. The spinal fluid test doesn’t distinguish between GBS and CIDP, but supports either diagnosis. It seems that you were treated appropriately for it, except that physical therapy seems to have been neglected. I had physical therapists looking after me soon after I was hospitalized, with particular attention to preventing contractions in my ankles.

If you have progressed from immobility to a wheelchair to a walker, you should expect to keep improving, but slowly. There is no way to tell how far you can go — you just need to do the best you can. When I got out of the hospital I was still using a wheelchair, but could use a walker at home. When I started going out with just a cane, two blocks was an effort and anything more seemed daunting. Now I walk without a cane and can go considerably farther without getting exhausted. You have to get there step by step, literally and figuratively. You must avoid overexerting yourself during recovery, so a job with much physical labor conflicts with that. But your strength and endurance should improve. How much and how soon only time will tell. You need to decide how to get your foot position back, and have the patience to rebuild your strength.

How far off are your tendons? Has a physical therapist measured the angle that your feet can reach before the pain is intolerable?

It seems to me that the hospital in Sioux Falls is not up to speed on what needs to be done for patients who have foot drop. Waiting until they are discharged to get physical therapy is not sufficient. Somebody should follow up on that.

I wish you the best in your recovery. Stick with it and make the effort to make the best recovery you are able.