Hi again everyone 🙂 I’ve just got a couple of new quesions that I was wondering about. My mum complains of head aches quite a lot lately and I was wondering if it was related to the IVIG or the actual CIDP itself?? Oh, and my mum wanted to ask (she’d do it herself but she’s a bit of a technophobe, haha) is she still able to drink alcohol or is that bad for the treatment?? Thank you, again, for your help. It means at lot!

Hello, Thanks so much for your replies to my previous questions and kindness. It really helps a lot. I saw my neurologist again this week and there may be a little good news. Earlier there was discussion that I had the axonal variant of GBS. He said that he is not convinced this is true. I might, but this is atypical for either classical or axonal GBS on EMG/NCV. Atypical and unusual were used a lot in the conversation!

I have three other questions.

1. I do not really understand at all why if one over does activity, it might take weeks to months to get back to baseline. I understand that healing from GBS takes a long time because nerves are very slow to heal (either remyelinate or regenerate damaged axons). But overdoing seems like it should be a temporary thing–overstretching muscles or depleting neurotransmitters or something. I know I am getting technical, but I really want to know. I have read a lot about fatigue in GBS (including the two articles in the prior GBSFI newsletters on fatigue) and just do not get it. I realize no one really understands it completely and that in no way negates that fatgue is present. The body is often a mystery. I guess the real question here is does overdoing it cause more damage (that takes a long time to heal) or is it just stupid (because you feel awful for a long time after it). I really, really do not want to get more damage; none of us do. I also do not want to feel like I have been run over by a truck, but sometimes life is not simple and other people really need help.

2. Both walking and vision are worse right after I wake up in the morning, then they get better, and then as the day goes on and I get tired, they both deteriorate. Have others experienced the mornings being worse as well? I do not know if the improvement is just the “adrenalin” rush of getting to work and jumping into a new day of trying to help people.

3. Can you have new symptoms and how does one know when there is progression or CIDP rather than ornery GBS? I am nervous about the fact that some of my toes have become numb in the last month and left face are more numb than it ever used to be and if this means ongoing damage or CIDP. The tingling and pain in the legs and arms is also worse now than ever before and my left quads last week started giving out like I am going to fall. I think I did way too much two weeks ago and the left leg strength is a little better after doing less last week. I worry that the muscles are getting weak with not walking, but trying to walk/exercise is making the rest of this worse. The exercises do not seem to be maintaining strength (or I am getting worse?). I understand I am still in the healing phase, but do not expect things to get worse or new things to appear like foot numbness. Does this happen and is it still acute GBS? I hope that the worsening numbness is just part of the complaint my body is making about being a hard-core workaholic but the numbness does not go away with rest. I am trying my best to find new ways to live and work without overdoing it so much, but it takes a while for an old dog to learn new tricks and modify several decades of habits of ways to do things. I have never been athletic, but I have always been quite active.

God bless you all for your wisdom and kindness to each other.

Deannie
With hope for a cure for this disease.