Hey everyone! Newbie here. Diagnosed in Feb 2014 after six long months of being bed bound and unable to walk on my own. I am slowly trying to regain my strength and exercise as much as I can to try to get back any of the muscles I've atrophied especially in my legs. It's been a journey.
Alongside my pain from cramping and spasming (tried baclofen for awhile until it caused a seizure) I have been experiencing extreme fatigue. As bad as when I was first sick and untreated. Some days it's a struggle to get out of bed at all. It's such a set back for me. I was wondering if anyone here has been prescribed anything that helps them?
I currently am on 300ml IVIG/Gammagaurd every six weeks (the taper from 4 wks has been ROUGH) and that's all. I am medicine sensitive and since I already am in a brain fog I am hesitant to really take anything. I do supplements in the form of a multi, magnesium (great help for my nerve pain), and a super b complex.
I have read that some people have had success with adderall but I'm nervous to bring this up out of the blue to my neurologist, although I've mentioned my lethargy and brain fog at every appointment. I'm nervous I'll come off as drug seeking although I have rejected every narcotic pain pill offered to me. I'm just so desperate to feel normal again and have become increasingly depressed by my limitations.
Any and all information would be wonderful..any resource at all really since I'm still incredibly new to my diagnosis. Very excited to have found this group!
Related but unrelated as well - I made a youtube video a year ago chronically my journey so far (back when my originally diagnosis was multi-focal motor neuropathy - since changed to CIDP with more testing) and I have had many reach out regarding it. I'd love to do a follow up and maybe a series regarding IVIG and the like. Any feedback would be great!!
Thanks so much everyone & keep on fighting <3