Just a question am I imagining this the strange sensations in my legs and arms keeps progressing toward my core. My jaw and upper lip are numb , tingle and feel slow to move. I have had a loading dose of IVIG and start regular treatments in a week. My breathing is short and labored. Does it get worse before it gets better? What should I expect . Everything I do makes me sweat and sleep. I don’t even want to wake up sometimes. When I do I feel like I am in a cast . I have no appetite. I would like any insight anyone can share.
When my course of IvIG works my shortness of breath is one of the first problems the IgG infusions solve. However, if the IVgG is not of significant dosage strength, or at the proper interval, the IvIG fails; usually just days before the next dosage is administered. I am now at 120g every two weeks with 50mg Imuran 2xdaily.
It is a horrible disease and i also feel as if I'm in a cast at times. Nevertheless, I force myself to do some type of concentrated and vigorous exercise. With exercise I push away pain and discomfort for 8-10 hours. And, I sleep much better. Swimming!
The breathing problem is voluntary muscles so don't worry, relax and breathing will improve. Or, exercise and breathing will improve.
You really have to act as your own advocate because the information and the manner in which this disease presents itself is different for each person. Kaiser let this disease slide on me for 7+ years, calling it diabetic neuropathy. I now have permanent muscle damage and a very bad attitude towards Kaiser.
So, start researching and find the solutions! Relief, when found is a miraculous thing, especially when your CIDP was misdiagnosed for years as mine was by Kaiser.
Pain: I take gapapentin (Nerontin) & Nortriptyline (which works well for me!). I supplement with Tylenol.
Regarding the face & jaw. Cervical nerves roots are effected.