Hi Nancy
yes i too exercise with free weights–i like it because it is a very measurable way to tell if im losing strength or not.
My hands or arms have not been affected by the cidp just my legs—feet and calves. my quadriceps did not feel weak until the start of the prednisone–which i guess can be a side effect of that and goes away after its stopped??? like you i did feel very “wired” on the first few weeks of starting the pred. I started it on aug 6th so i’ll be coming on my one month mark soon!! its a strange feeling to be internally feeling wired and energetic but to physically feel weaker. My goal is to just get through 2 or 3 months with it so I can make a justifiable decision with my dr as to whether or not it worked–im keeping a journal with very measurable stuff–like still cant stand on tippy toes or heels etc.. things that mainly deal with strength changes since that was the reason for trying it. Havent heard much about the cellcept you mentioned–is that another type of steroid? do you have any idea what your cidp is being caused by? I do have that info which i guess is good because its another way for them to be able to tell if something is working–if the % of antibodies is increasing or decreasing.
Hi Nancy
glad you “broke the Ice” nice to hear from you : ) my diagnosis also came from the mayo clinic–even though my neuro is in Mass and that is where i go for my ivig. It wasn’t until my current Dr. decided to send my bloodwork out to mayo that they were able to get a diagnosis as to what was causing the cidp. glad to hear the steroids worked for you, How did you feel while taking them?? I ? every day whether or not they’re working..and if they’re suppose to improve strength–then why do i feel weaker while taking them?? Lori
Hi Nancy
I think what everyone said is right on. Know also that he will need a lot of rest and sleep. GBS makes you very tired. Sometimes after ICU when I was in a regular hospital to recover I just wanted to sleep and not visit. It took a lot out of me. As you do get better though you appreciate more visitors. It seemed that mine slowed down toward the end. I was in the hospital over 100 days. I was paralyzed but not ventilated. I remember that in ICU I wished that they would not have the lights on all the time. Remember even though his body doesn’t work that his mind does. The hardest think for me was dreaming I could move and then not being able to. Also the pain comes because your nerve endings are no longer covered by the mylen sheath which has been eaten away so any touching is painful. I don’t always think the ICU staff realizes what GBS is all about. I remember they thought I would enjoy a bath and it wasn’t comforting at all. The first two weeks are tough. Also he will have to learn to use everything all over again and that is work. Physical therapy will take all he has and having visitors is draining unless they are willing just to sit and not want him to engage. I did have people to feed me for all my meals once I could eat. He will start with just baby food like meals. Also remember that his parents will find this very taxing. Any help that can be given the family with bringing them meals, helping sit with him, and cleaning their house will be appreciated I’m sure. It is a tiring time for the patient as well as the family. He is young so hopefully he will recover faster than some of us have but GBS stands for Getting Better Slowly.
Caroline
Michigan GBSer
Hi Nancy
Tell your son to hang in there. We are all praying for him and wishing him a speedy recovery. This will definitely change all of your lives but some things will be for the better. Would it help if he received cards from some of us? Let us know.
Take care and god bless.
sherry aka: stormy